SERVICES VS. NEEDS: AVAILABILITY OF SERVICES AND SELF-PERCEIVED ORAL CARE NEEDS FOR PEOPLE LIVING WITH HUMAN IMMUNODEFICIENCY VIRUS IN BRITISH COLUMBIA, CANADA by Abbas Ali Jessani DDS, The University of Karachi, 2010 MSc, The University of British Columbia, 2014 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSPHY in THE FACULTY OF GRADUATE AND POSTDOCTORAL STUDIES (Craniofacial Science) THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver) March 2019 © Abbas Ali Jessani, 2019 ii The following individuals certify that they have read, and recommend to the Faculty of Graduate and Postdoctoral Studies for acceptance, the dissertation entitled: SERVICES VS. NEEDS: AVAILABILITY OF SERVICES AND SELF-PERCEIVED ORAL CARE NEEDS FOR PEOPLE LIVING WITH HUMAN IMMUNODEFICIENCY VIRUS IN BRITISH COLUMBIA, CANADA. submitted by Abbas Ali Jessani in partial fulfillment of the requirements for the degree of Doctor of Philosophy In Craniofacial Science Examining Committee: Dr. Mario Brondani Supervisor Dr. J. Craig Phillips Supervisory Committee Member Dr. Leeann Donnelly Supervisory Committee Member Dr. Julio Montaner University Examiner Dr. Fernando Hugo External University Examiner Additional Supervisory Committee Members: Dr. Belinda Nicolau Supervisory Committee Member iii Abstract Objectives: To conduct an environmental scan of unmet dental treatment needs and patterns of dental service utilization of People Living with Immunodeficiency Virus (PLWHIV) in British Columbia (BC), Canada. Methods: An online environmental scan identified services available for PLWHIV in BC. Participants were asked to respond anonymously to a 40-item questionnaire. Associations between the psychosocial factors and outcome variables were evaluated using simple and multiple logistic regression analyses. Results: A total of 104 HIV organizations were identified in BC and less than 3% of the organizations offered dental care. Most of the services identified were distributed within the geographical location of Vancouver Coastal Health which has the highest prevalence of PLHIV in BC. Amongst the 186 participants who responded to the survey, majority of the respondents were male (n = 118; 63%) and were born in Canada (n = 116; 68%). Approximately 40% (n = 74) rated the health of their mouth as fair/poor and 60% (n = 112) reported having one or more unmet dental treatment need. In multiple logistic regression analysis, dental anxiety (OR = 0.1; 95% CI 0.0; 0.4), having a regular dentist (OR = 3.7; 95% CI 1.1; 12.6) and visiting a dental office in the last year (OR = 21.6; 95% CI 6.1; 76.5) were the strongest predictors for the unmet dental treatment needs and last dental visit. Conclusion: Services in general might be available where PLHIV live, but fall short in other areas; dental services are lacking across BC despite participants having high treatment needs. iv Lay Summary This study looked at the available general and oral health services and self-perceived dental treatment needs of people living with HIV. An online search was done and an anonymous questionnaire was used to identify the available services and unmet dental treatment needs of those living with HIV. Then, the relationships between the findings were evaluated using statistical tests. Of the 104 HIV organizations identified in BC, most of them offered preventive services and about one quarter offered support services. Less than 3% of organizations offered dental care. The important factors predicting dental service use and unmet dental treatment needs were: experiences of being discriminated against by dentists, having dental anxiety, not having dental insurance and having living difficulties such as lack of food, shelter, clothing, etc. These findings show there is a need to improve access to complete dental care to fully meet the oral health needs of people living with HIV. v Preface This thesis is an original intellectual product of the author Abbas Jessani. Data presented in this thesis were collected via an online search and an anonymous questionnaire distributed electronically to more than 600 people living with HIV (PLHIV) in British Columbia (BC). This study was approved by the University of British Columbia, Office of Behavioural Research Ethics Board (Certificate Number: H12-01049). As lead author, I was responsible for the development of the research proposal and the questionnaire, ethics approval, data collection and analysis, manuscript preparation and submission. This thesis consists of six chapters. The first chapter includes background and a literature review, and the research questions and objectives. Chapter 2 includes a review of the Andersen and Newman theoretical framework of health service utilization. Chapter 3 explores, through an environmental scan, the medical and dental services available for PLHIV in BC. A version of this chapter has been published by The Journal of the Canadian Dental Association. Jessani, A., & Brondani, M. (2019). Availability of Medical and Oral Health Services for People Living with HIV in British Columbia, Canada. J Can Dent Assoc, 27. This chapter and manuscript was written by me. My task during his PhD research included writing the research proposal and this manuscript (introduction, results, discussion and conclusion), collecting data and conducting data entry. Dr. Jolanta Aleksejuniene did the statistical analysis and helped him interpreting the results. My PhD. Supervisor, the other three committee member including Drs. Leeann Donnelly, J. Craig Phillips and Belinda Nicolau gave vi periodic feedback and have substantially contributed to this manuscript, from presenting ideas to formatting and presentation. Chapter 4 identifies the self-perceived patterns of dental service utilization and reasons for last dental visit of PLHIV in BC. A version of this chapter has been published by The Journal of Public Health Dentistry. Jessani, A., Aleksejuniene, J., Donnelly, L., Phillips, J. C., Nicolau, B., & Brondani, M (2019). Dental care utilization: patterns and predictors in persons living with HIV in British Columbia, Canada. Journal of Public Health Dentistry, 0(0). https://doi.org/10.1111/jphd.12304. This chapter and manuscript was written by me. My task during his PhD research included writing the research proposal and this manuscript (introduction, results, discussion and conclusion), collecting data and conducting data entry. Dr. Jolanta Aleksejuniene did the statistical analysis and helped him interpreting the results. My PhD. Supervisor, the other three committee member including Drs. Leeann Donnelly, J. Craig Phillips and Belinda Nicolau gave periodic feedback and have substantially contributed to this manuscript, from presenting ideas to formatting and presentation. Chapter 5 identifies the self-reported oral health status and unmet dental treatment needs of PLHIV in BC. Chapter 6 includes the overall discussion, conclusion and limitations of this thesis. Chapters 3, 4, 5 and 6 present versions of the above-referred manuscripts and are stand-alone sections of this work. In turn, some repetition of information did occur in terms of literature review, methods, results and discussion in each of the chapters. Attempts were made to minimize this repetition while making sure that enough information was given in each stand-alone chapter so they remained coherent. vii Table of Contents Abstract ......................................................................................................................................... iii Lay Summary ............................................................................................................................... iv Preface .............................................................................................................................................v Table of Contents ........................................................................................................................ vii List of Tables ............................................................................................................................... xii List of Figures ............................................................................................................................. xiii List of Abbreviations ................................................................................................................. xiv Acknowledgements .................................................................................................................... xvi Dedication .................................................................................................................................. xvii Chapter 1: Introduction ................................................................................................................1 1.1 Background ..................................................................................................................... 1 1.2 Oral health and HIV-infection ........................................................................................ 2 1.2.1 History..................................................................................................................... 2 1.2.2 Clinical care ............................................................................................................ 3 1.2.3 Care-seeking behaviour .......................................................................................... 3 1.3 Access to dental care for people living with HIV ........................................................... 4 1.4 Unmet dental treatment needs and pattern of dental service utilization of people living with HIV ..................................................................................................................................... 7 1.5 Research questions .......................................................................................................... 8 1.6 Objectives ....................................................................................................................... 8 Chapter 2: Theoretical framework ..............................................................................................9 viii 2.1 Background ..................................................................................................................... 9 2.1.1 Andersen and Newman behavioural model of health service utilization ............... 9 2.1.1.1 Predisposing factors .......................................................................................... 11 2.1.1.2 Enabling factors ................................................................................................ 12 2.1.1.3 Need factors ...................................................................................................... 13 Chapter 3: Environmental Scan of Medical and Dental Services Available in British Columbia, Canada .......................................................................................................................17 3.1 Summary ....................................................................................................................... 17 3.2 Introduction ................................................................................................................... 19 3.3 Method and materials .................................................................................................... 20 3.4 Results ........................................................................................................................... 23 3.4.1 Preventive and diagnostic services ....................................................................... 24 3.4.2 Treatment services ................................................................................................ 25 3.4.3 Support services .................................................................................................... 25 3.4.4 Geographical distribution of services ................................................................... 25 3.5 Discussion ..................................................................................................................... 30 3.5.1 Oral health services ............................................................................................... 33 3.6 Limitations .................................................................................................................... 34 3.7 Conclusion .................................................................................................................... 34 Chapter 4: Dental Service Utilization by People Living with HIV in British Columbia, Canada ..........................................................................................................................................36 4.1 Summary ....................................................................................................................... 36 4.2 Introduction ................................................................................................................... 38 ix 4.3 Method and materials .................................................................................................... 39 4.3.1 Recruitment of participants ................................................................................... 39 4.3.2 Data collection instrument .................................................................................... 40 4.3.3 Study variables ...................................................................................................... 41 4.3.3.1 Outcome Variables ............................................................................................ 41 4.3.3.2 Independent Variables ...................................................................................... 41 4.3.4 Statistical analysis ................................................................................................. 41 4.4 Results ........................................................................................................................... 42 4.4.1 Univariate Analyses .............................................................................................. 43 4.4.2 Bivariate analyses ................................................................................................. 44 4.4.2.1 Outcome 1: Dental visit within the last year ..................................................... 44 4.4.2.2 Outcome 2: Reason for the last dental visit (non-emergency vs. emergency) .. 45 4.4.3 Multivariate Analyses (Hierarchical Logistic Regressions) ................................. 46 4.4.3.1.1 Outcome 1: Dental visit within the last year (No vs. Yes) .......................... 46 4.4.3.1.2 Outcome 2: Reason for the last dental visit (non-emergency vs. emergency) ......................................................................................................................47 4.5 Discussion ..................................................................................................................... 56 4.6 Limitations .................................................................................................................... 60 4.7 Conclusion .................................................................................................................... 61 Chapter 5: Unmet Dental Treatment Needs of People Living with HIV in British Columbia, Canada ..........................................................................................................................................62 5.1 Summary ....................................................................................................................... 62 5.2 Introduction ................................................................................................................... 64 x 5.3 Method and materials .................................................................................................... 65 5.3.1 Recruitment of Participants ................................................................................... 65 5.3.2 Data collection instruments ................................................................................... 66 5.3.3 Study Variables ..................................................................................................... 67 5.3.3.1 Outcome Variables ............................................................................................ 67 5.3.4 Independent Variables .......................................................................................... 67 5.3.5 Statistical Analyses ............................................................................................... 68 5.4 Results ........................................................................................................................... 68 5.4.1.1 Univariate Analyses .......................................................................................... 69 5.4.1.2 Bivariate analyses ............................................................................................. 69 5.4.1.2.1 Outcome 1: Self-reported oral health status ............................................... 69 5.4.1.2.2 Outcome 2: Self-reported unmet dental treatment needs ........................... 69 5.4.1.3 Multivariate Analyses (Hierarchical Logistic Regressions) ............................. 70 5.4.1.3.1 Outcome 1: Self-reported oral health status ............................................... 70 5.4.1.3.2 Outcome 2: Self-reported unmet dental treatment needs ........................... 71 5.5 Discussion ..................................................................................................................... 82 5.6 Limitations .................................................................................................................... 86 5.7 Conclusions ................................................................................................................... 86 Chapter 6: Discussion, Conclusions and Future Directions ....................................................88 6.1 Objective 1 (Chapter 3): Environmental Scan – Availability of general and oral health services ...................................................................................................................................... 90 6.2 Objective 2 (Chapter 4): Utilization of dental services by PLHIV ............................... 91 6.3 Objective 3 (Chapter 5): Self-reported oral health needs by PLHIV ............................ 94 xi 6.4 General Conclusions ..................................................................................................... 96 6.5 Challenges and Limitations ........................................................................................... 96 6.6 Implications and future directions ................................................................................ 98 Bibliography .................................................................................................................................99 Appendices ..................................................................................................................................106 Appendix A - Theoretical models in Public Health ................................................................ 106 Appendix B - HIV-specific preventive and diagnostic services in British Columbia ............ 111 Appendix C - HIV-specific treatment services in British Columbia, Canada ........................ 116 Appendix D - HIV-specific support services in British Columbia ......................................... 123 Appendix E - Participant recruitment advertisement .............................................................. 130 Appendix F – Research information and informed consent ................................................... 131 Appendix G - Survey questionnaire ........................................................................................ 132 Appendix H - Operationalization of variables according to A&N model of health service utilization ................................................................................................................................ 140 xii List of Tables Table 4.1. Frequency distribution of the Andersen and Newman (A&N) predisposing factors and dental visit patterns among a sample of people living with HIV ........................ 49 Table 4.2. Frequency distribution of Andersen and Newman (A&N) enabling and need factors and dental visit patterns among a sample of people living with HIV ........................ 50 Table 4.3. Results from the hierarchical logistic regression model for the association between the Andersen and Newman (A&N) model predisposing, enabling and need factors and dental visit in the last year in a sample of people living with HIV .................................. 52 Table 4.4. Results from the hierarchical logistic regression for the association between the Andersen and Newman (A&N) model predisposing, enabling and need factors and reason for last dental visit in a sample of people living with HIV ...................................................... 54 Table 5.1. Frequency distribution of the Andersen and Newman (A&N) predisposing factors and self-reported oral health unmet dental treatment needs among a sample of people living with HIV ................................................................................................................ 72 Table 5.2. Frequency distribution of the Andersen and Newman (A&N) enabling factors and self-reported oral health and unmet dental treatment needs among a sample of people living with HIV ............................................................................................................................ 74 Table 5.3. Frequency distribution of the Andersen and Newman (A&N) need factors and self-reported oral health and unmet dental treatment needs among a sample of people living with HIV ............................................................................................................................ 75 xiii List of Figures Figure 1.1. Supply and demand of health needs (Adopted from Wright et al. 1998) ............. 6 Figure 2.1. The Andersen behavioural model in the 1960s ..................................................... 10 Figure 2.2. Andersen and Newman model for health service utilization (Andersen & Newman, 2005). ........................................................................................................................... 11 Figure 2.3. Population and behavioural components of the A&N model pertinent to research objectives (Andersen & Newman, 2005) .................................................................. 15 Figure 3.1. Geographical distribution of the organizations that provide HIV-specific preventive services in British Columbia. .................................................................................. 27 Figure 3.2. Geographical distribution of the organizations that provide HIV-specific treatment services in British Columbia. ................................................................................... 28 Figure 3.3. Geographical distribution of the organizations that provide HIV-specific support services in British Columbia. ....................................................................................... 29 xiv List of Abbreviations A&N Andersen and Newman Model for Health Service Utilization AIDS Acquired Immune Deficiency Syndrome ART Antiretroviral Therapy BC British Columbia CBO Community Based Organization CHMS Canadian Health Measure Survey DND Department of National Defense FHA Fraser Health Authority FoD Faculty of Dentistry HIV Human Immune Deficiency Virus HMSO HIV-Related Medical Service Organization IHA Interior Health Authority MIPA Maximum Involvement of People Living with AIDS NHA Northern Health Authority OCDO Office of Chief Dental Officer PEP Post-Exposure Prophylaxis PLHIV Persons Living with HIV PLSBC Positive Living Society of British Columbia PoC Point of Care PrEP Pre-Exposure Prophylaxis UBC University of British Columbia xv VCHA Vancouver Coastal Health Authority VIA Vancouver Island Authority WHO World Health Organization xvi Acknowledgements I would like to express my heartfelt gratitude to my supervisor Dr. Mario Brondani for his consistent guidance and support throughout this endeavour. He is not only an excellent academic and researcher, but his work ethic and wisdom are truly a great source of inspiration. I would also like to extend my sincere thanks to my advisory committee members, Drs. J. Craig Phillips, Leeann Donnelly and Belinda Nicolau, for their expertise and constructive feedback that helped me to think outside the box. I would also like to extent my sincerest appreciation to Dr. Jolanta Aleksejūnienė for her support for the statistical analysis of this thesis. My sincere thanks to Carmen Kinniburgh for her editorial services. I would like to thank the Positive Living Society of British Columbia (PLSBC) and Pacific AIDS Network for their tremendous support and collaboration. I would especially like to thank Elgin Lim and Brandon Laviolette for their assistance on participant recruitment and data collection. To the staff of PLSBC, thank you for all your cooperation during the four months of data collection. To my parents, Naseem and Abdullah, and my sisters, Shireen and Nadia, thanks for your constant love and prayers. Sincere gratitude and thanks to my aunts, Niyamet and Munira, and my uncles, Shaffin and Barkat, and my best friend Ricky, for their enormous support and affection since I moved to Canada in August 2011. I would further like to acknowledge how grateful I am to be a part of one of the best learning institutes in the world. I have enjoyed and learned during every bit of my academic experience at the Faculty of Dentistry at UBC. xvii Dedication I dedicate this work to my beloved parents, Naseem and Abdullah. I cannot thank you enough for all the hardships you have endured to provide me with the best education and for making me a good human being. Thank you for being the best parents in the world! To my aunt, Niyamet Hamirani, who is as close to me as my parents. I cannot thank you enough for all your encouragement and motivation since I moved to Canada. It’s because of your unconditional love and support that I have come this far. Thank you for being there through thick and thin. Last but not least, this work is also dedicated to my two beloved and adorable sisters, Shireen and Nadia, for always being my strength and support. 1 Chapter 1: Introduction 1.1 Background According to the World Health Organization (WHO), there were 35 million people worldwide living with HIV and AIDS in 2013 (WHO | HIV/AIDS 2013). The United Nations Program on HIV and AIDS (UNAIDS) reports HIV as a “silent, infectious killer” given that 39 million people worldwide have died since the beginning of the epidemic in the early 1980s. The number of people living with HIV (PLHIV) globally rose from 8 million in 1990 to 34 million in 2011 (WHO | HIV/AIDS, 2013). In Canada, there are believed to be 75,500 PLHIV, mostly in Ontario (33.7%), British Columbia (24.4%), Saskatchewan (19.2%) and Alberta (16.9%), while the annual incidence1 of new HIV infections is approximately 3,175 cases per year (Government of Canada, 2016). According to the 2016 HIV surveillance report, there has been an increase in the national diagnosis rate of HIV in Canada from 5.8 per 100,000 population in 2015 to 6.4 per 100,000 population in 2016, which is the highest number of cases reported since 2009 (Bourgeois et al., 2016). Although there is no cure for HIV to date, the use of Antiretroviral Therapy (ART) has greatly reduced the fatalities and co-morbidities associated with HIV and AIDS (Broder, 2010). In fact, such therapies have helped PLHIV live healthier lives with undetectable viral loads and a standard CD4 cell count (Broder, 2010). Yet despite the advances new drug therapies offer, 1 Incidence refers to the occurrence of new cases of disease or injury in a population over a specific period of time or new cases per unit of population. Prevalence refers to the proportion of persons in a population who have a particular disease. Prevalence differs from incidence in that prevalence includes all cases, both new and pre-existing, in the population at the specified time, whereas incidence is limited to new cases only. 2 PLHIV in general, and those from a lower socioeconomic status in particular, still face numerous psychosocial challenges and barriers to accessing care, especially oral health care services (Tobias et al., 2012). HIV infection remains mostly prevalent among the more marginalized segments of society, including those who live at, or below, the poverty line (Fox et al., 2012). Due to their lower socioeconomic status, PLHIV are still subjected to various psychosocial disparities such as unemployment, food and housing insecurity, illicit drug use, and mental illness – all of which are predisposing and enabling factors that impinge upon oral health2 service utilization (Fox et al., 2012; Rueda et al., 2016). 1.2 Oral health and HIV-infection Oral health2 has been part of the HIV epidemic since the 1980s in terms of 1) history; 2) clinical care; and 3) care-seeking behaviour. 1.2.1 History Dentistry has been an important component of HIV primary care. In the early HIV-epidemic, up to 90% of all undiagnosed HIV-positive patients presented with an oral condition related to disease progression at least once during the course of their HIV infection (Weinert et al., 1996; McCarthy, 1992). The advent of ART has substantially decreased the incidence of oral manifestations and PLHIV seldom report oral manifestations due to HIV itself (Fox et al., 2012). 2 Defined as “a state of being free from mouth and facial pain, oral and throat cancer, oral infection and sores, periodontal (gum) disease, tooth decay, tooth loss, and other diseases and disorders that limit an individual’s capacity in biting, chewing, smiling, speaking, and psychosocial wellbeing” (WHO, fact sheet, 318, April 2012). 3 1.2.2 Clinical care Oral health care professionals can be the first to encounter HIV-positive patients for whom the primary symptomatology manifests in the mouth (Cherry-Peppers et al., 2003). In fact, the mouth can signal the early warnings of nutritional deficiencies and immunodeficiency for PLHIV in the form of candidiasis and hairy leukoplakia (McCarthy, 1992; Cherry-Peppers et al., 2003). Historically, other common oral manifestations of HIV included angular cheilitis, salivary gland enlargement, Kaposi sarcoma, necrotizing ulcerative periodontitis, and squamous cell carcinoma (Cherry-Peppers et al., 2003; Shenoy et al., 2017). While some oral pathologies such as candidiasis and Kaposi sarcoma have been drastically reduced due to HIV medications, others like salivary gland diseases and oral warts have become more prominent (Sroussi et al., 2008). Furthermore, xerostomia – commonly known as “dry mouth” due to a reduced flow of saliva – might be a side effect of ART for some individuals (Sroussi et al., 2008; El Howati et al., 2018). This low or altered salivary flow can potentially make the oral cavity susceptible to dental caries and periodontal infection, as well as negatively impact chewing and swallowing, and the fitting of dental prosthesis (Berghai, 2000). 1.2.3 Care-seeking behaviour Some individuals may be under the care of a dental professional more frequently than they are under the care of other health care providers, particularly those who have dental insurance (Dietz et al., 2008). The 2011 Canadian Health Measures Survey (CMHS) showed that many Canadians do not access primary care physicians because they do not feel “sick”. In contrast, almost 70% of Canadians have seen a dental professional for preventive reasons once a year or more (CHMS, 2011). Hence, dental professionals can 4 play an important role in the early diagnosis of HIV-infection (Dietz et al., 2008; Pindborg, 1989) to the extent that HIV point of care (POC) in dental settings has been advocated (Brondani at al., 2012). 1.3 Access to dental care for people living with HIV Despite the historical, clinical and behavioural relationships between HIV and dentistry, we know little about PLHIV’s self-reported oral health care needs, how they access services including dental care, and what types of services are available to them, particularly in British Columbia. It is known that the 2011 CHMS gives an overall snapshot of the health and oral health of the Canadian population (Government of Canada, 2009). According to this survey, almost 70% of Canadians have dental insurance although they are generally not the ones who bear the greatest oral health care needs. The representativeness of the CHMS reaches 97% of Canadians aged 6 to 79 years old: almost 6,000 participants were randomly selected from 15 different communities across the country between March 2007 and February 2009. Although CHMS includes data on self-reported general and oral health, it does not specifically target ‘high need’ populations such as PLHIV. It is also known that the cost of dental services in Canada remains the major barrier preventing people from obtaining adequate dental care, particularly the marginalized and the working poor (Mago et al., 2016). As efforts have been put forward to address the oral health needs and expand access to dental services for underserved and vulnerable individuals such as PLHIV (Bretz et al., 2000), it is important to identify their oral health needs to better tailor dental services for them (Marx et al., 1997; Heslin et al., 2001; Kenagy et al., 2003). For example, in 2006, the HIV/AIDS Bureau of the United States’ Health Resources and Services Administration funded a Special Project of National Significance to expand access to 5 dental services for PLHIV in 15 cities across the U.S. in both rural and urban settings. As a follow up in 2011, Rajabuin et al. attempted to classify these services by conducting an environmental scan and developing a taxonomy to understand the needs and identify the gaps in existing services (Rajabiun et al., 2011). Their study emphasized the importance of services that were specifically tailored for PLHIV, including those services with dental professionals who were sensitive to HIV-positive patients, while providing a safe dental home for a population living with a fear of being stigmatized and judged (Rajabiun et al., 2011). In fact, the status of being ‘positive’ creates another layer of complexity that hinders oral health care service utilization, especially in the presence of stigma and discrimination (Patel et al., 2015). According to Patel et al., 60% of PLHIV anticipate to be judged, stigmatized or treated with disrespect by their dental care providers, which further enhances their mistrust in, and reduced utilization of, the dental care system (Patel et al., 2015). Also, fear of disclosing a ‘positive’ status, anxiety about dental treatment, self-stigmatization, distress from having HIV, and unawareness of the importance of oral health are additional barriers to accessing dental care for this population (Fox et al., 2012). All of these factors make this population even more vulnerable3 to oral and dental diseases – services that are tailored specifically for PLHIV are then justified. In turn, dental services provided by dedicated dental clinics, academic institutions or mobile dental programs have shown to increase access and utilization of dental services by 3 Vulnerability is the state of susceptibility to harm from exposure to stresses associated with environmental and social change and from the absence of capacity to adapt; “they are populations that are considered to be at greater risk for developing health problems” (McHugh et al. , 2012, page 144) and who have “limited access to resources, marginalized sociocultural status, lack of education, chronic mental illness, homelessness, age, gender, multiple losses and ethnicity all continue to heightened vulnerability” (DeChesnay & Anderson, 2012). 6 PLHIV (Zabos et al., 2001). Accordingly, availability of such dental services directly resonates with the unmet oral health needs of marginalized populations (Formicola et al., 2004). Wright et al. further explained that the process of identifying health care needs as perceived by a population should lead to the provision of services to address those needs – and they distinguish health care needs from supply and demand based on financial affordability and lack of resources (Figure 1.1; Wright et al., 1998). According to this study, need relates to “the capacity to benefit”, and once the needs are identified, resources should be made available and tailored accordingly (Wright et al., 1998). Demand would then refer to “what patients ask for” as self-perceived, while supply would try to match this demand by the private or public health care system (Wright et al., 1998; Bretz et al., 2000). The availability, type and scope of services to PLHIV in BC has yet to be identified and explored. Figure 1.1. Supply and demand of health needs (Adopted from Wright et al. 1998) 7 1.4 Unmet dental treatment needs and pattern of dental service utilization of people living with HIV According to a longitudinal oral health needs assessment conducted by Marcus et al. in the United States in 2005, 40% of PLHIV had unmet oral needs for the past 10 years (Marcus et al., 2005). Furthermore, they observed that 50% of PLHIV had unmet dental needs and had no financial resources to seek dental care (Marx et al., 1997). The most common oral health problems reported were dental caries and periodontal infection (Fox et al., 2012), as also seen in other marginalized and under-served populations including Indigenous people, vulnerable pregnant women, etc. (The First Nations Oral Health Survey, 2010; Jessani et al., 2016). In turn, PLHIV tend to exhibit higher Decayed Missing Filled Teeth (DMFT) scores than non-HIV individuals, sometimes as much as 32 times higher (Phelan et al., 2004). Other studies reported that the rates of coronal and radicular caries were 1.2 times higher among PLHIV than non-HIV infected individuals, in addition to a lower number of permanent teeth associated with decreased CD4 cell counts (Marcus et al., 2005). Despite the above studies, clinical data available on the oral health needs of this study population is sporadic given that conducting a clinical study is not always feasible due to the vulnerability of PLHIV. Henceforth, a wide range of literature suggests that self-reported health needs assessments can serve as surrogate measures to explore the clinical status of the target population. For example, a study conducted by Coulter and colleagues in 2001 confirmed that self-reported oral health surveys conducted with PLHIV helped to identify barriers to oral care, and to substantiate the clinical implications of various diseases to this population (Coulter et al., 2001). Similarly, an HIV Cost Utilization study suggested that self-reported dental needs of PLHIV should be taken into account when creating resources for them and continuing education 8 for dental professionals (Freed et al., 2005). Given the gaps in the literature described above and the need to further explore the self-reported oral health care needs of, and the services available for, PLHIV in British Columbia, this study included the following research questions and objectives: 1.5 Research questions 1. How are the HIV-specific services available for PLHIV in BC characterized in terms of their scope, type and nature? 2. How can the patterns of dental service utilization be understood within the context of the Anderson & Newman model of health service utilization? 3. What are the self-reported unmet oral health needs of PLHIV within the context of the Anderson & Newman model of health service utilization? 1.6 Objectives 1. To map out different HIV-specific services available for PLHIV in BC. 2. To estimate the associations among the time and reason of last dental visit utilizing the Anderson & Newman model of health service utilization. 3. To estimate the associations among self-reported oral health status and dental treatment needs utilizing the Anderson & Newman model of health service utilization. In light of the above research questions and objectives, the Andersen & Newman model of health service utilization was employed as a framework to guide the methods, data analysis and discussion of my doctoral dissertation, and it is presented and critically appraised in Chapter 2. 9 Chapter 2: Theoretical framework 2.1 Background Various attempts have been made to understand the interrelationships between different psychosocial factors that influence overall health and service utilization (Andersen 1995). This resulted in the evolution of various theoretical models or frameworks that helped to generalize the relationships among variables likely influencing overall health care utilization, to understand the concept of access to care, and to predict quality of life outcomes (Andersen 1995). These frameworks are usually expressed in the form of diagrammatic representation that visually reflect simple or complex relationships between various factors and/or variables in relation to the main concept or overall outcome. Depending on the scope and nature of the research questions, these frameworks are expressed as circular models, like the Brofenbrenner ecological model (Bronfenbrenner et al., 1998), or as multi-dimensional models that represent the association of numerous independent factors, such as the Andersen and Newman model for health service utilization (Figure 3). The various models and frameworks commonly used in public health are presented in Appendix A; given the nature of the proposed objectives and the complexity of my research questions and objectives, the Andersen and Newman (A&N) behavioural model of health service utilization was employed as the theoretical framework for my study (Figure 3). 2.1.1 Andersen and Newman behavioural model of health service utilization Andersen’s model was first developed in 1968 to examine the use of health services in general by a ‘family as a unit’ or as a single entity, but soon shifted the focus to the individual as the unity of analysis due to the heterogeneity that family members can possess (Andersen, 1968; 10 Figure 2.2). It pioneered the integration of ‘how and why’ by identifying the factors that impact one’s capacity to access health care systems and health services in a given time and space (Andersen, 1995). From 1968 to 2014, significant modifications were made to this model by various researchers to better understand the factors that impede or facilitate the utilization of health care services, and the complex relationship between prediction of, and explanation for, this usage (Andersen et al., 2005). Figure 2.1. The Andersen behavioural model in the 1960s As a modification to the original Andersen model, the current A&N model presents a multifactorial relationship comprised of four broad characteristics: environment, population characteristics, health behaviours and outcome. Various domains, each with a set of variables, represent each of these characteristics. For example, environmental characteristics are mainly comprised of health care systems and the external environment. Similarly, population characteristics are classified with three domains: predisposing factors (e.g., demographics), 11 enabling factors (e.g., ability to pay), and needs factors (e.g., health status and/or perceived needs) (Andersen et al., 2005). The unidirectional arrows in this model reflect the direct relationship of each domain to the other domains and variables. Similarly, bi-directional arrows represent the multifactorial interrelationships amongst two or more domains with its characteristics as depicted in Figure 2.2. Figure 2.2. Andersen and Newman model for health service utilization (Andersen & Newman, 2005). 2.1.1.1 Predisposing factors The predisposing factors in the A&N model comprise variables representing the tendency to utilize available health services by an individual. The three main components of this domain include: demographics (age, sex, marital status); social structure (education, ethnicity, occupation, family size, religion and residential mobility); and beliefs (values concerning health 12 and illness, attitudes towards health services and knowledge about disease). According to A&N, an individual is more or less likely to use health services based on demographic and societal factors including age, gender, ethnicity, culture and education (Andersen, 1995; Andersen et al., 2005). Although these factors have not been explicitly addressed or taken into consideration in earlier developments of this model, they substantially impact an individual’s health care seeking behaviour (Bass et al., 1987). In addition, other important factors that appeared to be missing from the initial model include psychological aspects such as mental illness, and genetic markers (True et al., 1997; Rivnyak et al., 1989). Hence, this updated version of the A&N model includes some of the most important environmental factors that could predispose an individual to utilize a health service. 2.1.1.2 Enabling factors The second domain of the A&N model pertains to enabling factors. These factors emphasize that both community and personal characteristics must be present for most people to enable them to utilize available health services as follows: Ø Health personnel and facilities must be present within close proximity of a community because prolonged travel time and lack of professional support can inhibit the usage of health services (Andersen et al., 2005); and Ø People must know how to get to these services to utilize them accordingly, while also having the means to afford them (Andersen et al., 2005). Enabling factors also relate to resources found within a household or a community that helps individuals to pursue available health services and include income, financial affordability, health coverage/insurance, and having a family doctor and/or dentist (Andersen & Newman, 2005). According to some critics, the A&N model initially did not take the organizational aspect of 13 health care systems into consideration and ignored its impact on overall health service utilization (Andersen & Newman, 2005). In order to accommodate these missing elements, modifications were made and a section on the health care delivery system was added in the mid-70s (Andersen et al., 2005). In this modified version, adequacy and distribution of resources within an organization were then seen as determinants of the quality of services provided, capable of affecting individuals’ health care utilization (Evans et al, 1990). It was also emphasized that health service utilization further depends on the type of health services available (e.g., medical and/or dental) and their primary and secondary purposes (Evans et al., 1990; Andersen et al., 2005). 2.1.1.3 Need factors The A&N theoretical framework places a great deal of importance on self-reported health status or how people view their state of being ‘sick’ or ‘ill’(Andersen & Newman, 2005). Unlike other contemporary models, it also includes self-reported needs and evaluated clinical status as determinants of health service utilization. Furthermore, A&N makes an attempt to explore service utilization from a more social and environmental perspective, rather than from a sole biological focal point (Andersen et al., 2005; Pescosolido & Kronenfeld, 1995). Nevertheless, within the broader limits of predisposing and enabling factors, the framework does not ignore the fact that there is a biological imperative identified as clinical need that could form the basis of one’s health service utilizing behaviour. This biological imperative is represented by the evaluated clinical needs of the individual or population (Pescosolido et al., 1995; Babitsch et al., 2012). The evaluated need represents professional judgment about an individual’s clinical health status. However, one should remember that this clinically evaluated need does not take into consideration self-perceived needs, and hence the reason why the A&N 14 model includes both. Moreover, the definition of a clinical need may vary according to social aspects, advancements in medical science, tools, and the training and competency of the professional performing the clinical assessment (Andersen, 1995; Pescosolido et al., 1995). The A&N model has been applied in various dental studies to determine the impact of societal factors on one’s access to dental service utilization for Canadians in general (Ramraj et al., 2012) and for pregnant women in particular (Jessani et al., 2016). However, the A&N model is not without limitations. Some of the commonly identified limitations include: little or no attention to social and/or cultural interactions, overemphasis of clinical needs, oversimplification of utilization of services based on presence or absence of such services, and no inclusion of informal care such as online resources, telemedicine and dentistry (Babitsch et al., 2012). Despite the limitations, the most updated version of the A&N framework (Figure 2.2) seems to offer a way to explore the complex roles of different societal and individual factors that may influence one’s utilization of health care services. In fact, due to its versatility and multi-dimensional approach, I employed this model for my MSc research focused on the patterns of dental service utilization by vulnerable pregnant women in BC; it enabled me to conclude that self-reported oral health was strongly influenced by the same predisposing and enabling factors as dental care use (Jessani et al., 2016). For my doctoral thesis, I employed the A&N model of service utilization to guide the methods, data analysis and discussion of my doctoral dissertation as presented in the proceeding chapters. 15 Figure 2.3. Population and behavioural components of the A&N model pertinent to research objectives (Andersen & Newman, 2005) 16 Next chapter Chapter 3 of this dissertation further elaborates on the A&N model by focusing on its environment component. It also addresses the first research objective of my study: to explore and classify the various medical and dental services available for PLHIV in the province of British Columbia. 17 Chapter 3: Environmental Scan of Medical and Dental Services Available in British Columbia, Canada 3.1 Summary Objectives: To map out the geographical distribution and categorize the scope of HIV-specific medical and dental services across the province of British Columbia (BC). Methods: Data was collected through an environmental scan using online search engines such as Google and Yahoo, as well as the websites of health services agencies and community/not-for-profit organizations. Informal telephone conversations with the organizations were conducted to confirm the findings obtained through the online scans. The available services were categorized in terms of 1) scope (e.g., prevention, treatment, or support) and 2) geographical location in relation to the rates of new HIV infection per 100,000 people across the province. Results: A total of 104 HIV organizations were identified in BC. Among all the 51 existing cities examined across BC, 40 cities housed one or more organizations that provided HIV-related services. Of all the services offered at these organizations, 59% offered preventive services including sexual health education, 15% offered treatment services for HIV-related conditions, and 38% offered support services including social assistance. Only 3% of the organizations offered basic dental care. In 2014, there were 12,100 known HIV-infected individuals in BC with 261 new infections per 100,000 people. Although services tended to cluster around metropolitan areas of high HIV prevalence, Northern BC remains underserved despite high rates of new HIV infections. 18 Conclusions: Services in general might be available where PLHIV live, but fall short in other areas; almost half of all the services available are mostly educational in nature. Dental services are lacking across BC. 19 3.2 Introduction There were more than 75,500 PLHIV in Canada in 2014 (Government of Canada, 2014); 12,000 PLHIV were in British Columbia which accounts for approximately 16% of the HIV-infected Canadian population (British Columbia Center for Disease Contol 2015). In 2014, the highest rates of new HIV infection in the province occurred in the Vancouver Coastal Health Authority (VCHA) region with 142 new infections per 100,000 people, followed by the Northern Health Authority (NHA) region with 45 new infections per 100,000 people (British Columbia Center for Disease Contol 2015). During the last decade, advances were made to manage bio-medical complications associated with HIV, while other important aspects of well-being, including oral health and supportive services, have seldom been taken into consideration. Most PLHIV around the world are deprived of basic health and support resources either because of a pure lack of services tailored to address their needs or because of the stigma and marginalization that they still face (Tappuni et al., 2001; Patel et al., 2016; Rueda et al., 2016). In turn, there is a need to offer services that incorporate the principles of Greater Involvement of People Living with HIV (GIPA)4 and Meaningful Involvement of People Living with HIV (MIPA)* in order to cater to their unmet health care needs. Incorporation of these principles would allow PLHIV to feel empowered and safe to access health care services, including dental care, as more than 50% of them do not receive the proper oral care they need (Rajabuin et al., 2011). Therefore, this 4 A principle that aims to emphasize the rights and responsibilities of people living with HIV, including their right to self-determination and participation in decision-making processes that affect their lives, including research and services, and to enhance the quality and effectiveness of the AIDS response. (UNAIDS 2007). 20 environmental scan explored the existing general and oral health services available for PLHIV in BC. Such tailored initiatives could potentially target the environmental and health care factors discussed in the Andersen and Newman (A&N) model of health service utilization (Andersen, 1968; Andersen & Newman, 1995) that has been employed successfully in dental research (Jessani et al., 2016; Ramraj et al., 2012). However, there is no data available on the geographical distribution of oral health care services, or general services for that matter, for PLHIV in BC. As approximately 16% of HIV-infected Canadians reside in BC, it is important to identify the general and oral health services available for these individuals. This would not only identify the existing gaps in the health care delivery system, but would also inform policy makers from other Canadian provinces to identify similar gaps within the wider HIV-infected population. Therefore, the aims of this Chapter were to identify and classify the types and scope of health-related, HIV-specific services under the environmental and health care system characteristics of the A&N model of health service utilization. Although the effective service-to-population ratio is unknown when it comes to HIV care, it is known that no service can actually provide 100% of the care required by all individuals in the communities they serve. As such, it was not possible to estimate the number of services required to fully care for PLHIV. 3.3 Method and materials Ethical approval was obtained from the University of British Columbia (H16-00735-A002), and an environmental scan using online information only was performed. Inclusion criteria pertained to online services physically located in BC that were available exclusively to, or provided targeted care for, PLHIV and that also provided information via their websites. Online services tailored to the general public without mentioning HIV/AIDS, and physically located elsewhere in Canada, were excluded. Information on an organization’s name, location, and types 21 and scope of HIV services offered were gathered from two main sources. The first source of data collection utilized online search engines such as Google© and Yahoo© to identify the services available for PLHIV in BC. The keywords used on those search engines were: ‘HIV and/or AIDS services in BC’, ‘HIV and/or AIDS services in Canada’, ‘Downtown Eastside and HIV’, ‘HIV/AIDS health professionals in BC’, ‘Heath Authorities in BC and HIV’, ‘HIV incidence and prevalence in BC’, ‘HIV incidence and prevalence in Canada’, ‘HIV incidence and prevalence in Downtown Eastside, Vancouver’, ‘Public Health Agency of Canada and HIV’, and ‘BC Centre for Disease Control and HIV’. Although the use of all these above terms led to literally millions of hits, most of the information shown was not relevant to my search after the second page of both search engines. Therefore, I focused on annual reports that listed the services available of PLHIV in BC (e.g., Priorities for action in managing the epidemics, HIV/AIDS in B.C. from the BC Ministry of Health), and from resource lists such as the one provided by Positive Plus One for BC and Registry for HIV addiction resources by BC Centre of Excellence (BCCDC, 2018). The most current data on HIV incidence and prevalence in BC and Canada were extracted from government organizations such as the Public Health Agency of Canada (PHAC) and the British Columbia Centre for Disease Control (BCCDC). The second source of data collection was confirmatory in nature, via informal telephone conversations with each individual organization identified in the initial data collection, to ensure that the most up-to-date and accurate information was being collected. This was done by contacting each organizations’ phone number posted mainly in the ‘contact us’ section. If respondents were unsure about the information, then the phone call was directed to a staff person with better knowledge on the subject. When contacted via telephone, a brief introduction about the study was provided to then verify with the contacted person if the website had the most current information, or if there were any changes 22 that were not updated on the website. There was no attempt to conduct an actual audio-recorded interview with an interview guide; rather, the telephone call was informal to check for the accuracy of the information gathered from the scan. All the retrieved information was gathered in a Microsoft Excel® spreadsheet containing the organization’s name, location, and types and scope of HIV services offered (Appendices B, C and D). With the information gathered from the sources described above, services provided by the identified organizations were classified into the following three broad categories based on the A&N framework of health service utilization: 1. HIV-preventive and diagnostic services – Preventive and diagnostic services were understood as practices done to prevent or diagnose HIV infections. It included services offering various sexually transmitted disease testing services, pre- and post-exposure prophylaxis, HIV education, partner notification, and preventive resources. 2. HIV-treatment services – Treatment was defined as the management and/or care of a particular disease/disorder within and beyond HIV. It included services offering medical treatment, dental treatment, and highly active antiretroviral therapy (ART) dispensation. 3. HIV-support services – Support services were understood as a coordinated system of services designed to help maintain the independence of an individual. Support services included providing referrals, peer support, counselling and mental health services, drop-in activities, and financial assistance, among others. All the postal codes and addresses of the organizations that provided services were then mapped using ArcGIS (ESRI version 10.2) to localize their geographical distribution across British Columbia. This geographical distribution followed the boundaries of the five regional health authorities (Fraser Health Authority - FHA, Vancouver Coastal Health Authority- VCHA, Interior Health Authority - IHA, Vancouver Island Authority - VIA, and Northern Health 23 Authority - NHA) for easier visualization of the distribution of the various HIV-specific services across BC. Only ambulatory and primary health care services were included. 3.4 Results According to the BC Local Government Act and Regional District Document, BC had 51 cities5 in 2016; 40 cities offered one or more of the HIV-related services identified through either publicly funded organizations and/or their respective health authority. In total, 104 organizations offered an array of preventive (Appendix B), treatment (Appendix C), and support (Appendix D) services tailored exclusively for PLHIV. Most of the supportive services were located in the geographical region of Downtown Eastside of Vancouver within VCHA that is considered the most ‘under-privileged’ and marginalized neighbourhood in BC; it is also the neighbourhood with the highest prevalence and incidence of HIV in the province. However, areas within NHA, which has the second highest incidence of new HIV cases, have the least amount of services. According to the results, 59% of these organizations offered preventive services, 15% offered treatment-related services and 26% offered one or more types of support services. However, these percentages may overlap given that the same organization can provide more than one type of service. Only 3% of the organizations seemed to offer preventive and treatment-related dental services to their clients at no cost. The information presented in Appendices A, B, and C reflect the findings primarily from the online scan, as only 75 of the 104 organizations were actually reached by phone; 69 organizations confirmed the accuracy of the online information while 6 offered updates to the nature, scope and/or types of services. The other 29 5 A community can be incorporated as a city if its population exceeds 5,000 at some point. Currently, there are 51 communities in BC that meet this criterion and are designated as cities. 24 organizations either did not have a working phone, or the phone number provided on their website was out-of-service/unreachable. 3.4.1 Preventive and diagnostic services As mentioned above, 59% of the organizations identified through data collection offered HIV-preventive services. Amongst these organizations, 42% offered condom dispensaries, sexually transmitted infection (STI) information brochures and pamphlets, online and telephone helplines (AIDS Vancouver and the BCCDC), community forums (such as the Positive Living Society of BC - Vancouver), and resource libraries (Appendix B). Of the remaining organizations, 27% were focused on STI screening and diagnoses primarily provided with the help of public health nurses (performing point of care (PoC)6 and HIV risk assessments). This included dispensation of the Post-Exposure Prophylaxis (PEP)7 regimen for their clients, while organizations such as the Health Initiative for Men (HIM) and Bute clinic in Vancouver provided the Pre-Exposure Prophylaxis (PrEP)8 regimen. Also, HIV education and notification services for partners were provided by 24% of the organizations – an HIV-negative partner is informed about his or her partners’ status through in-person counselling and education. Lastly, 7% of these organizations offered all the identified preventive services except for PrEP (Appendix B). 6 According to the Centre for Disease Control, PoC is also known as rapid test and is used to screen for HIV antibodies. This test can be performed in clinics and other health care settings and results are available within minutes. 7 According to the Centre for Disease Control, PEP means administering ART to prevent the HIV infection after being potentially exposed to HIV. It should be used in emergency situations, within 72 hours of exposure to HIV. 8 According to the Centre for Disease Control, PrEP is a way for HIV-negative people to prevent an HIV infection by taking a pill (Truvada) every day. 25 3.4.2 Treatment services Treatment services were offered by 15% of the organizations and mainly included medical and HIV-monitoring services, laboratory work including blood counts, liver and kidney function tests, CD4 cell counts and viral load tests, and ART dispensation and information. Approximately 3% of the organizations offered free basic dental care, such as dental cleaning, oral hygiene education, amalgam fillings, and extractions (Appendix C). Two of these organizations collaborate with the University of British Columbia’s, Faculty of Dentistry to provide preventive dental services for their clients. 3.4.3 Support services As stated previously, 38% of all the services available were categorized as supportive. Referrals (such as for medical and dental care) were offered by 31% of these support services, peer navigation support and leisure activities were offered by 5% of these support services, and 27% of them offered support services for mental health and provided counselling in many areas to their members. Financial assistance and food services accounted for 16% of the total support services offered (Appendix D). 3.4.4 Geographical distribution of services According to the BCCDC, the Vancouver Coastal Health Authority (VCHA) was reported to have the highest incidence of PLHIV with 132 new cases per 100,000 people in 2014, while the Northern Health Authority (NHA) was reported to have the second highest incidence of HIV with 45 new cases per 100,000 people in 2014. Furthermore, as per the BCCDC HIV-monitoring report in 2016, the highest prevalence of PLHIV was reported in VCHA with 4,669 PLHIV, while the NHA reported the least prevalence with 304 PLHIV despite the second highest incidence. 26 The services shown in Appendices A, B and C were plotted using a BC map with the boundaries of the five health authorities as a spatial representation (Figures 1–3). Most of the preventive services were located in the Lower Mainland of Vancouver, which falls within the VCHA region (Figure 1). Similarly, most of the treatment and supportive services were also concentrated in the Vancouver Lower Mainland, which has the highest rate of HIV infection in BC. On the contrary, a lack of services was identified in Northern BC, which has the second highest incidence of HIV infections in BC (BCCDC, 2014) and the least retention to HIV care (BCCDC HIV-monitoring report, 2016). All the dental services identified were located in the geographical region covered by the VCHA. None of the other four regional BC health authorities were identified as having oral care services specifically tailored towards the needs of the HIV-positive population. 27 Figure 3.1. Geographical distribution of the organizations that provide HIV-specific preventive services in British Columbia. 28 Figure 3.2. Geographical distribution of the organizations that provide HIV-specific treatment services in British Columbia. 29 Figure 3.3. Geographical distribution of the organizations that provide HIV-specific support services in British Columbia. 30 3.5 Discussion Services that are designed to provide care and support for PLHIV are scarce (Tobias et al., 2012). According to a BCCDC report, although the incidence of HIV-infection has decreased in certain high-risk groups (e.g., intravenous drug users), the numbers are not significant enough to predict the decrease as a future trend. The NHA, which had the second highest incidence of HIV diagnosis in 2014 and yet the lowest prevalence, remains the geographical location with minimal-to-no services targeted towards PLHIV (Figures 1–3). According to an HIV-monitoring report in 2016, 25% of people diagnosed with HIV in BC were unable to retain their adherence to care and treatment regimes, and 27% of them were lost between treatments and were unable to achieve undetectable viral loads. In terms of the geographical distribution of these numbers, the NHA, which has the second highest incidence of HIV, faced the most loss in retaining PLHIV to care and the VCH experienced the least amount of loss (BCCDC HIV-monitoring report, 2016). This could have been due to the presence of more services in the geographical location of VCH in comparison to other health authorities as indicated in the findings, which would imply longer travel times for PLHIV to access services. A recent report suggested that because more people are living with HIV in Canada, more services are needed to improve their overall quality of life, not the opposite (BCCDC HIV-monitoring report, 2016). This was further confirmed by my study’s results, which showed a mismatch of medical, dental, and social support services for PLHIV in BC. However, there is no data on the actual utilization of these services by PLHIV. The first type of services identified in this study was preventive services. More specifically, the main preventive services found for PLHIV in BC were HIV testing services, partner notification, and HIV-related educational resources. This finding seems to be in accordance with Marcus and colleagues, as they reported that HIV-preventive services with a targeted intervention can play a 31 vital role in limiting the transmission of the virus (Marcus et al., 2005). Preventive services such as free STI testing, awareness about HIV transmission, Pre-Exposure Prophylaxis (PrEP), and Post-Exposure Prophylaxis (PEP) can help reduce the transmission of HIV infections. However, these services are not evenly distributed across British Columbia and certain high-risk communities remain underserved. The second type of services identified in my study was treatment services. The A&N model classified treatment services under secondary9 and tertiary care10. With a publicly funded health care system, everyone has the right to access medical care in Canada, including PLHIV. The cost of HIV medications is covered by the Medical Service Plan of BC, thus there are no out-of-pocket expenses associated with the medical treatment of an HIV infection. There are, however, disparities in HIV treatment services regardless of the funding available to provide medications, as reported in an HIV cost-and-services utilization study and alluded to in the A&N model. The most common disparities in HIV treatment include delays in entering care, geographical barriers (such as living in rural vs. urban areas), physician factors (such as visiting a general physician vs. an HIV specialist), co-occurring disorders (such as addiction and mental health problems), and unmet needs with existing support services (Uphold et al., 2005; Rajabiun et al., 2011). The third type of services identified was support services. The majority of HIV support services in BC are located within the geographical location of the VCHA, while other health authorities have minimal-to-no support services for PLHIV (Figure 3). The main goal of these 9 Secondary care refers to the process of treatment that restores one’s state of normal functioning. 10 The goal of tertiary care is to reduce the detrimental effects of an already established illness. 32 services, as reported by Katz and colleagues, is to alleviate the social and financial burdens for PLHIV in order to improve their overall quality of life (Katz et al., 2000). According to the HIV Health Utilization Study, HIV communities face multiple concurrent health and social challenges. There is a great need for social services such as mental health or substance abuse counselling, employment services, extended health insurance, affordable housing, and other forms of social assistance (Uphold et al., 2005; Rajabiun et al., 2011). PLHIV experiencing these adversities are also likely to exhibit social isolation and neglect their adherence to ART treatment, but peer navigators and case managers can play a significant role in overcoming these problems (Rajabiun et al., 2011). Such individualized support can increase access to various services and motivate patients to adhere to their ART regimen (Rajabiun et al., 2011). Unfortunately, there are very few services in BC that offer this type of personalized support to PLHIV, and it is apparent there is very little variability across the different organizations in terms of actual types of services offered. For this particular population, mental health problems usually co-exist with substance abuse issues (Kenagy et al., 2003). Having an HIV infection can further exacerbate mental health conditions, which can impact the overall well-being of an individual. Therefore, more services are likely needed to overcome the mental health problems of PLHIV. These services should not only provide the medical interventions for mental health illnesses, but also the necessary support services such as safe injection sites, haircuts, counselling, recreation, and massage services (Kenagy et al., 2003). This environmental scan further highlighted the lack of financial assistance or food and housing services necessary to adequately meet the support needs of the PLHIV population in BC (Appendix D). As reported by Donnelly and colleagues, the discrimination faced by PLHIV can lead to a loss of housing and jobs, and can impact their personal relationships (Donnelly et al., 33 2016). As suggested by the A&N model, support services can help ease the stress of the psychosocial disparities faced, in the case of this study, by PLHIV and can positively reboot their overall quality of life. More importantly, PLHIV can retain medical care, which has also been proven to boost access to dental services (Lemay et al., 2009). 3.5.1 Oral health services Significantly fewer avenues for accessing oral health services were found in this study compared to the medical and social support services. As highlighted by Rajabiun et al. 2011 and Fox and colleagues 2012, PLHIV would benefit greatly from preventive services including scaling, fluoride application, and oral hygiene education. These services could significantly prevent common dental diseases, including dental decay and gingival problems, which can lead to extra financial and health burdens for this population. As reported by Rajabiun and colleagues, increasing preventive dental services may improve oral health related quality of life or OHRQoL, have a positive effect on self-esteem, and help in overcoming social isolation and financial burdens as highlighted in the A&N model (Rajabiun et al., 2011; Andersen et al., 2005). Despite VCHA offering limited oral care services, all the other BC health authorities seem to be deprived of services tailored specifically to the needs of the HIV-positive population (Appendix B). In addition to personal factors, this can be due to several layers of environmental barriers including disproportionate distribution of services and even lack of services in some BC areas such as Northern BC. Unfortunately, findings of minimal-to-no dental treatment services has also been confirmed by various other studies around the globe, indicating that neither BC nor Canada are exceptions (Zabos et al., 2001). The findings presented here set the stage for follow up studies to further evaluate the 104 services available in BC in terms of uptake and enrolment, 34 effectiveness, and patient satisfaction so that they can be replicated in other jurisdictions and provinces. 3.6 Limitations Services that accept all patients regardless of their HIV-positive status were excluded, as were services accessible online but physically located outside British Columbia. Services were found primarily by an online search method and through informal, yet very limited, telephone conversations; some other services and organizations might exist, but were not found through these channels. It was unfortunate that almost one quarter of the identified organizations providing services could not be reached by phone, thereby not allowing confirmation of the accuracy of the information presented on their websites. Also, there was only one attempt to call them, which likely contributed to this limitation. There is also a slight possibility that some of these organizations might no longer exist, although their websites are still available online. Correlations of available services with population were based on incidence of newly diagnosed HIV infections and not prevalence because no data was available on the prevalence of HIV cases in each health authority. Despite these limitations, this attempt to formally classify the types of services available for PLHIV in British Columbia is the first of its kind in Canada. 3.7 Conclusion The results indicate a mismatch between the number and scope of services available for PLHIV and the distribution of HIV infections in certain areas of BC. The situation is even more troublesome for oral health services offered to this population, especially given that PLHIV can exhibit higher oral health needs than the non-HIV-positive population. Results from this study can be used to inform policy makers and oral health care providers about the gaps in the oral health delivery system while providing care for PLHIV in BC. 35 Next chapter Now that the location and types of services have been identified, particularly dental care services, Chapter 4 of this dissertation further elaborates on the second research objective: to understand the patterns of dental service utilization within the context of the A&N model of health service utilization via self-reported data by PLHIV. 36 Chapter 4: Dental Service Utilization by People Living with HIV in British Columbia, Canada 4.1 Summary Objectives. To identify the predisposing, enabling and need factors of the Andersen and Newman (A&N) model and their associations with the pattern of dental service utilization in a sample of People Living with HIV (PLHIV) in British Columbia (BC). Methods. Participants were identified via the e-newsletters of two HIV-organizations. They responded anonymously to a self-reported, 40-item online questionnaire to explore the patterns of dental service utilization. In order to be included, participants had to meet the following inclusion criteria: 1) be at least 19 years old; 2) self-identify as HIV-positive; 3) be able to provide consent and be willing to voluntarily participate in the study; 4) be residing in British Columbia; and 5) be able to proficiently respond to the questions in English. Following the descriptive statistics, the associations between the A&N model factors and main outcome variables (dental visit within the last year and reasons of dental visit) were evaluated using simple and multiple logistic regression analyses. Results. Out of 600 potential PLHIV participants approached electronically, 210 responded to the survey and 186 met the inclusion criteria. The experience of being discriminated against by dental professionals (p = 0.005), having dental anxiety (p < 0.001), not having dental insurance (p = 0.001) and having living difficulties (p = 0.004) were significantly associated with non-emergency dental visits. In multiple logistic regression analysis, dental anxiety (OR = 0.1; 95% CI 0.0; 0.4), having a regular dentist (OR = 3.7; 95% CI 1.1; 12.6) and visiting a dental office in 37 the last year (OR = 21.6; 95% CI 6.1; 76.5) were the strongest predictors of dental service utilization in this study. Conclusion. Several predisposing (e.g., self-perceived discrimination), enabling (e.g., dental anxiety, lack of dental insurance) and need factors (e.g., self-reported oral health) from the A&N model were associated with dental service utilization of PLHIV in BC, which remains low for this population. In addition to various psychosocial barriers, a significant number of respondents reported experiencing stigma and discrimination from their oral care providers. 38 4.2 Introduction There were approximately 75,500 People Living with HIV (PLHIV) in Canada in 2014; British Columbia had the third highest prevalence of HIV cases in the country and the annual incidence of new HIV infections in Canada was at approximately 3,175 cases per year (Government of Canada, 2014). The introduction of highly active antiretroviral drugs (ART) has positively impacted PLHIV, who are now living as long as the general population (Broder, 2010). While antiretroviral drugs substantially reduced oral manifestations of HIV, PLHIV may still experience oral diseases that negatively impact their oral-health-related quality of life (Tobias et al., 2012; El Howati et al., 2018). Unfortunately, oral health is infrequently considered as part of the overall medical management for these individuals and is often neglected by their health care providers. In countries like Canada, where PLHIV have access to a public health care system and where there is easy access to ART, dental care services are still privately administered and delivered, and oral health disparities are found in PLHIV. According to Marcus et al. (2005), as much as 40% of PLHIV have unmet dental treatment needs, and less than half had visited a dental professional within the last year. High levels of dental treatment need and irregular visits to dental professionals were also reported by other studies (Marx et al., 1997; Fox et al., 2012). The factors most commonly associated with the lack of access to dental care are having a low income, using illicit drugs, having Aboriginal status, and being unemployed, while stigma and discrimination create another layer of complexity in accessing oral health services (Patel et al., 2015; Fox et al., 2012). The Andersen and Newman (A&N) model of health service utilization offers a more comprehensive view of the various factors involved in accessing and utilizing care, and categorizes them into predisposing, enabling and need factors (Andersen & Newman, 2005). This model has been 39 applied in various dental studies to determine the impact of societal factors on one’s access to dental service utilization for Canadians in general (Ramraj et al., 2012) and for pregnant women in particular (Jessani et al., 2016). Predisposing factors include socio-demographic characteristics, while enabling factors determine a variety of resources available for individuals to seek and utilize health care. Need factors are one’s beliefs, attitudes and self-perceived need for professional healthcare services (Andersen & Newman, 2005). No study has yet been conducted in Canada to understand the patterns of dental service utilization for PLHIV based on predisposing, enabling and needs factors from the A&N model of service utilization. Therefore, based on the A&N model of health service utilization, the patterns and predictors of dental care utilization were identified in a selected sample of PLHIV in BC, Canada. 4.3 Method and materials This cross-sectional study was approved by the University of British Columbia’s Behavioural Ethics Board (H16-00735-A002). Data was collected via a voluntary, anonymous and self-reported oral health questionnaire of 40 items that utilized the University of British Columbia Fluid Survey Tool, between June and December, 2016. 4.3.1 Recruitment of participants Data was collected mainly via two HIV organizations’ websites: The Positive Living Society of British Columbia (PLSBC) and the Pacific AIDS Network of British Columbia. Although several other organizations were invited to join this project, only these two organizations agreed to participate and they both reached out to several PLHIV across B.C. The questionnaire was distributed by e-newsletters and website advertisements to more than 600 subscribed members of these two organizations inviting them to voluntarily participate in this study (although these two organizations provide services for more than 5,000 members, not 40 every member is registered to receive the monthly e-newsletter; Appendix E). If they wished to participate, the participants were then directed to an informed consent page with information about the study (Appendix F). In order to be included, participants had to meet the following inclusion criteria: 1) be at least 19 years old; 2) self-identify as HIV-positive; 3) be able to provide consent and be willing to voluntarily participate in the study; 4) be residing in British Columbia; and 5) be able to proficiently respond to the questions in English. 4.3.2 Data collection instrument The questionnaire employed in this study was adapted from the Canadian Health Measures Survey, a comprehensive dental assessment that provides a national estimate of oral health status and unmet dental treatment needs of almost 6,000 Canadians. (CHMS, 2011; Ramraj, 2012). The choice of predictors that were tested in this study came from the A&N model of health service utilization (Andersen et al., 2005). The research instrument took less than 15 minutes to complete, and was designed to maximize response rate and minimize missing data. It consisted of 29 close-ended and 11 open-ended questions concerning predisposing (e.g., age, gender, ethnic background, etc.), enabling (e.g., dental insurance, employment status, etc.), and need factors (e.g., reasons for going to the dentist, self-reported oral health, etc.). A pilot test was conducted with 10 different participants, who were asked to review the questionnaire and provide their feedback regarding the comprehension and clarity of the questions. The questionnaire was subsequently revised for the full study based on their feedback, mostly on the semantics and order of the questions as per the feedback received (Appendix G). 41 4.3.3 Study variables 4.3.3.1 Outcome Variables The study included two outcome variables: time of last dental visit, which was dichotomized into 0 for no dental visit within the last year and 1 for at least one dental visit within the last year (i.e., less than one year); and reason for this visit was dichotomized into 0 for emergency reasons (pain or acute dental problem) and 1 for non-emergency reasons (including check-ups or treatments) (Appendix H). 4.3.3.2 Independent Variables The independent variables (predictors) were grouped according to the A&N model of dental service utilization: predisposing (age, number of years living in Canada, education, ethnicity, refugee status, general health, mental health conditions, time of HIV diagnosis, HIV medications, current medical conditions due to HIV and past medical conditions due to HIV), enabling (employment status, income, avoiding dental treatment due to cost, living difficulties, dental insurance, social support, having a family doctor, having a regular dentist, experienced discrimination by a dental professional and dental anxiety), and need factors (self-perceived treatment needs, current oral health problems, past oral health problems, oral health beliefs and self-reported oral health status) (Appendix H). 4.3.4 Statistical analysis Data were analyzed using IBM SPSS® Version 22.0 software with the threshold for statistical significance set at p < 0.05. Descriptive statistics were used to report percentages of respondents for selected variables comprising the A&N model of dental service utilization. In order to evaluate differences in the participants’ responses, a Pearson’s Chi-Square and Fisher’s Exact Tests were performed. Logistic Hierarchical Regression (LHR) analyses were 42 used to determine the main predictors of reasons for, and frequency of, dental visits. As suggested by Victora and colleagues in 1997, frameworks like the A&N model provide guidance for using the multivariate analyses proposed and helped me to interpret the results of such analyses in light of the social and biological aspects of HIV infection (Victora et al., 1997). In turn, each of the hierarchical logistic regressions (one for each of the study outcomes) included three models. Model 1 tested the domain of predisposing factors; the predisposing factors associated with an outcome at the p < 0.1 level were subsequently introduced into model 2 (domain: enabling factors). Model 3 tested the domain of need factors, and in addition, included the pre-selected (p < 0.1) predictors from model 2. The Nagelkarke R2 and overall significance of the model were used as statistical indicators of the overall fit of the models (Regression Analysis and Linear Models: Concepts, Applications, and Implementation 2017). The assumption of independence among the predictors in all models was tested by multicollinearity diagnostics. The threshold for the tolerance values (fulfilling the assumption of independence among multiple predictors) was set at 0.5 or more. 4.4 Results A total of 210 out of 600 PLHIV responded to the questionnaire and 186 met the above inclusion criteria for a response rate of 35%. Twenty-four of the respondents did not meet one or more inclusion criteria and their answers were excluded from the data set before analysis. Although not all 186 respondents filled out the entire questionnaire, their responses were analyzed and missing data was acknowledged at the bottom of the Tables. The findings of the bivariate analyses are presented in Tables 4.1 and 4.2, and the multivariate results are shown in Tables 4.3 and 4.4, respectively. 43 4.4.1 Univariate Analyses The sample distribution was organized in the domains of predisposing, enabling and need factors. The present study employed two outcome variables: 1) time of the last dental visit and 2) reason for the last dental visit. Around one third of participants (34.2%) had a dental visit within the last year and the most frequent reason for a dental visit was emergency care (43.8%). Regarding the predisposing factors, the following distributions were found: the mean age of participants was 46.9 years (SD = 11.8), and ranged from 19 to 83 years old. The majority of participants were male (63.9%), 30.9% were female, and the remaining 3.0% defined themselves as other. Of all participants, 68.2% were born in Canada and around half of the respondents had a college or higher-level, post-secondary education. Approximately half of the participants self-identified as of white race, 18.2% of Aboriginal descent, and 11.4% of respondents self-identified as being refugees. The majority of respondents reported having excellent, very good or good general health (71.1%). Nearly half of respondents (49.2%) reported having been diagnosed with a mental health condition at some point in their lives.11 The majority of respondents were diagnosed with HIV five years or longer (87.2%) and were taking HIV medications (94.8%). Nearly one third reported having current HIV-related medical conditions12 (31.2%). 11 Past HIV-related reported medical conditions included: Pneumocystic Pnemonia, Thrush, Shingles, Hepatotoxicity, High Grade Fever, Swollen Lymph Nodes, Nausea, Fatigue, Bilateral Pulmonary Embolism due to HIV Infection, Kidney Disorders, Kaposi Sarcoma, Depression, Skin Rash, Suicidal Thoughts and Adrenal Fatigue. 12 Current HIV-related reported medical conditions included: Neuropathy, Arthritis, Anxiety, Depression, Lipodystrophy, Weight Loss and Cognitive Issues. 44 Almost half (49.4%) of the respondents were employed and 63.5% had an annual income of less than $20,000 CAD. Approximately, 51% of the respondents avoided dental treatments due to cost. The study participants reported having food insecurity (59.2%), not being able to keep up with transportation costs (38.2%), and having difficulty with affordable housing (62.2%). The majority of respondents reported having social support (71.5%) and having someone they trust to talk with about their HIV-related issues (56.0%). Although 91.2% had a family doctor, only 26.9% had a regular dentist. From all respondents, 43.1% reported having dental anxiety. Five need-related factors were inquired about via the study questionnaire: 1) current oral conditions; 2) past oral conditions; 3) dental treatments needed; 4) oral health; and 5) importance of oral health. The mean and SD for current self-reported conditions was 2.6 ± 2.5; for past conditions was 2.2 ± 2.7; and for self-reported treatment needs was 2.6 ± 3.0. Almost half of respondents (47.5%) reported excellent, very good or good oral health, and for 59.4% of respondents, oral health was deemed very important. 4.4.2 Bivariate analyses 4.4.2.1 Outcome 1: Dental visit within the last year There was a significant (p = 0.008) age-related difference among respondents: those older than 56 years reported having a dental visit within the last year compared to younger participants who did not report having visited a dentist in the previous year. Fewer females (20.0%) than males (80.0%) reported a dental visit within the last year. Fewer participants who lived in Canada for less than 10 years (8.7%) had a dental visit within the last 12 months compared to participants who had lived in Canada longer than 10 years (48.1%) or were born in Canada (35.2%). There were also significant proportional differences between the 45 respondents who experienced discrimination by dental professionals (22.5%) and the ones who did not have such an experience (44.0%; Table 4.1). Significantly fewer respondents who self-reported having poor general health (67.7%) had a dental visit within the last year. Other predisposing factors were not significantly associated with the pattern of dental visit related outcomes. The results related to the enabling and need factors are presented in Table 4.2. The following enabling factors were significantly associated with the first outcome ‘dental visit within the last year’: income (p = 0.011), living difficulties (p = 0.004), dental insurance (p = 0.001), and having a regular dentist (p < 0.001). Among need factors, the following were significantly associated with visiting the dentist in the past year: self-perceived dental treatment need (p < 0.001), present oral problems (p = 0.024), self-reported oral health (p < 0.001) and importance of oral health (p < 0.001). 4.4.2.2 Outcome 2: Reason for the last dental visit (non-emergency vs. emergency) The predisposing factors that were significantly related to the second study outcome, reason for the last dental visit (non-emergency vs. emergency), are shown in Table 4.1, and include gender (p = 0.018), past medical conditions due to HIV (p = 0.028) and taking HIV medications (p = 0.016). The following enabling factors were also significantly associated with reason for the last dental visit: income (p = 0.009), experience of discrimination by dental professionals (p = 0.001), dental insurance (p < 0.001), having a regular dentist (p < 0.001), dental anxiety (p = 0.002) and avoiding dental treatments due to cost (p = 0.008). Reason for the last dental visit was bivariately significantly associated with self-perceived dental treatment need (p < 0.001), oral health beliefs (p = 0.024), self-reported oral health (p < 0.001) and importance of oral health (p = 0.014) (Table 4.2). 46 4.4.3 Multivariate Analyses (Hierarchical Logistic Regressions) The results of multivariate analysis testing for the first study outcome are presented in Table 4.3 and for the second outcome in Table 4.4. 4.4.3.1.1 Outcome 1: Dental visit within the last year (No vs. Yes) Table 4.3 presents the results related to outcome 1, dental visit within the last year in three LHR models with the following sequence of predictor testing. Model 1 tested a total of 13 predisposing factors in relation to the outcome dental visit within the last year, which was significant (p < 0.001), while the predisposing factors (predictors) jointly explained 41.2% (Nagelkarke R2 = 0.412) of the variance in the timing of the last dental visit. The assumption of no collinearity (i.e., no dependency among predictors) was fulfilled. Although the only significant predictor in model 1 at the p < 0.05 level was ‘≥ 50 years of age’ (OR = 2.3; 95% CI 1.0; 5.0), age and other predictors from model 1 that were significant at p < 0.10 (namely ‘gender’, ‘white race’, ‘general health’, ‘mental health conditions’ and ‘current medical conditions due to HIV’) were selected for subsequent inclusion into model 2 where enabling factors were examined. Model 2 (enabling factors) was highly significant (p < 0.001) and the preselected predisposing factors and enabling factors jointly explained 61.3% (Nagelkarke R2 = 0.613) of the variance in outcome 1. The assumption of no collinearity (independent predictors) was fulfilled as all tolerance values were above 0.600. The significant predictors in model 2 at the p < 0.05 level were ‘white race’ (OR = 0.2; 95% CI 0.1; 0.8) and lower ‘dental anxiety’ (OR = 0.1; 95% CI 0.0; 0.4). The two enabling predictors that were significant at p < 0.10 included ‘white race’, ‘having a regular family doctor’ and ‘dental anxiety’ and were selected for subsequent inclusion into model 3 in which need factors were studied. Model 3 (need 47 factors) was highly significant (p < 0.001) and the preselected predisposing factors and enabling factors jointly explained 73.4% (Nagelkarke R2 = 0.734) of the variance in the outcome dental visit within the last year. The assumption of no collinearity (independent predictors) was fulfilled as all tolerance values were above 0.500. 4.4.3.1.2 Outcome 2: Reason for the last dental visit (non-emergency vs. emergency) Table 4.4 presents the results related to outcome 2, reason for the last dental visit, in three LHR models with the following sequence of predictor testing. Model 1 analyzed a total of 13 predisposing factors in relationship to outcome 2, reason for the last dental visit; it was highly significant (p < 0.001), and these predictors jointly explained 26.0% (Nagelkarke R2 = 0.260) of the variance in outcome 2. The assumption of no collinearity (independent predictors) was fulfilled as all tolerance values were above 0.600. There were no significant predisposing predictors in model 1 at the p < 0.05 level. The two predictors that were significant at p < 0.10, ‘gender’ and ‘white race’, were selected for subsequent inclusion into model 2. Model 2 analyzed these two selected predisposing factors and nine enabling factors in relationship to outcome 2; it was highly significant (p < 0.001), and the preselected predisposing factors and all enabling factors jointly explained 42.7% (Nagelkarke R2 = 0.427) of the variance in outcome 2. The assumption for no collinearity in model 2 was fulfilled as all tolerance values were above 0.700. The significant predictors at the p < 0.05 level in model 2 were ‘income’ (OR = 3.1; 95% CI 1.1; 9.9) and ‘having a regular dentist’ (OR = 7.2; 95% CI 2.2; 23.1), and together with predictors from model 2 that were significant at the p < 0.10 level (including ‘income’, ‘dental insurance’ and ‘having a regular dentist’) were selected for subsequent inclusion into model 3. Model 3 analyzed three selected enabling factors and seven need factors as predictors of the reason for the last dental visit. Model 3 was highly significant (p < 0.001) 48 and the set of multiple predictors jointly explained 61.2% (Nagelkarke R2 = 0.612) of the variance in the outcome variable. The assumption of no collinearity was fulfilled as all tolerance values were above 0.500. 49 Table 4.1. Frequency distribution of the Andersen and Newman (A&N) predisposing factors and dental visit patterns among a sample of people living with HIV DENTAL VISIT PATTERN Dental visit within last year Non-emergency reason for the last visit No n= 186 (%) Yes n = 186 (%) P valuea No n =186 (%) Yes n = 186 (%) P valuea Age 19-40 years 34 (79.1) 9 (20.9) 0.008 22 (52.4) 20 (47.6) 0.774 41-55 years 49 (65.3) 26 (34.7) 42 (56.0) 33 (44.0) 56+ years 11 (42.3) 15 (57.7) 12 (48.0) 13 (52.0) Gender Males 59 (59.0) 41 (41.0) 0.030 45 (45.5) 54 (54.5) 0.018 Females 40 (80.0) 10 (20.0) 35 (68.6) 16 (31.4) Other 4 (80.0) 1 (20.0) 3 (75.0) 1 (25.0) Living in Canada < 10 years 21 (91.3) 2 (8.7) 0.011 13 (56.5) 10 (43.5) 0.947 ≥ 10 years 14 (51.9) 13 (48.1) 14 (51.9) 13 (48.1) Born in Canada 70 (64.8) 38 (35.2) 57 (53.8) 49 (46.2) Education < High school 56 (73.7) 20 (26.3) 0.113 46 (62.2) 28 (37.8) 0.049 >High school 43 (58.1) 31 (41.9) 35 (47.3) 39 (52.7) Race/ethnicity White 48 (62.3) 29 (37.7) 0.064 39 (51.3) 37 (48.7) 0.084 Aboriginal 17 (65.4) 9 (34.6) 14 (53.8) 12 (46.2) Other 31 (83.8) 6 (16.2) 27 (73.0) 10 (27.0) Refugee status No 90 (67.2) 44 (32.8) 0.425 75 (56.4) 58 (43.6) 0.110 Yes 11 (57.9) 8 (42.1) 7 (36.8) 12 (63.2) General health Good 37 (80.4) 9 (19.6) 0.012 29 (63.0) 17 (37.0) 0.111 Poor 66 (59.5) 44 (50.5) 54 (49.1) 56 (50.9) Mental health conditions No 59 (57.3) 32 (61.5) 0.611 47 (52.2) 43 (47.8) 0.492 Yes 44 (42.7) 20 (38.5) 37 (57.8) 27 (42.2) Diagnosed with HIV < 5 years ago 16 (80.0) 4 (20.0) 0.202 13 (68.4) 6 (31.6) 0.206 ≥ 5 years ago 88 (65.7) 46 (34.3) 71 (53.0) 63 (47.0) HIV Medications No 6 (85.7) 1 (14.3) 0.283 7 (100.0) 0 (0.0) 0.016 Yes 94 (66.2) 48 (33.8) 76 (53.9) 65 (46.1) Medical condition due to HIV (current) No 72 (68.6) 33 (31.4) 0.685 54 (51.9) 50 (48.1) 0.310 Yes 30 (65.2) 16 (34.8) 28 (60.9) 18 (39.1) Medical condition due to HIV (past) No 38 (59.4) 26 (40.6) 0.092 28 (44.4) 35 (55.6) 0.028 Yes 63 (72.4) 24 (27.6) 55 (62.5) 33 (37.5) aChi Square Test/Fisher’s Exact Test Note: The numbers referring to each variable and its respective answer pertain to those participants who provided responses. Altogether, missing data was present in more than half of the questionnaires, and in various questions. The percentages shown in this table represent row percentages 50 Table 4.2. Frequency distribution of Andersen and Newman (A&N) enabling and need factors and dental visit patterns among a sample of people living with HIV DENTAL VISIT PATTERN Dental visit within last year Non-emergency reason for the last visit No n = 186 (%) Yes n = 186 (%) P valuea No n =186 (%) Yes n = 186 (%) P valuea ENABLING FACTORS Employment Unemployed 45 (65.2) 24 (34.8) 0.692 34 (49.3) 35 (50.7) 0.263 Employed 58 (68.2) 27 (31.8) 49 (58.3) 35 (41.7) Income < 5.000CAD 26 (81.3) 6 (18.8) 0.011 21 (65.6) 11 (34.4) 0.009 5.000-20.000CAD 57 (69.5) 25 (30.5) 48 (59.3) 33 (40.7) >20.000CAD 19 (48.7) 20 (51.3) 13 (33.3) 26 (66.7) Avoiding treatment due to cost No 50 (63.3) 29 (36.7) 0.431 34 (43.6) 44 (56.4) 0.008 Yes 54 (69.2) 24 (30.8) 51 (64.4) 28 (35.4) Living difficulties No 6 (35.3) 11 (64.7) 0.004 4 (23.5) 13 (76.5) 0.008 Yes 96 (70.1) 41 (29.9) 78 (57.4) 58 (42.6) Dental insurance No 53 (81.5) 12 (18.5) 0.001 46 (70.8) 19 (29.2) <0.001 Yes 50 (54.9) 41 (45.1) 38 (41.8) 53 (58.2) Social support No 11 (64.7) 6 (35.3) 0.871 8 (47.1) 9 (52.9) 0.535 Yes 94 (66.7) 47 (33.3) 77 (55.0) 63 (45.0) Having a family doctor No 11 (91.7) 1 (8.3) 0.046 7 (63.6) 4 (36.4) 0.530 Yes 92 (64.3) 51 (35.7) 77 (53.8) 65 (46.2) Having a regular dentist No 94 (79.7) 24 (20.3) <0.001 79 (67.5) 38 (32.5) <0.001 Yes 12 (27.9) 31 (72.1) 7 (16.3) 36 (83.7) Discrimination by dental professionals No 47 (56.0) 37 (44.0) 0.005 35 (42.2) 48 (57.8) 0.001 Yes 55 (77.5) 16 (22.5) 49 (68.1) 23 (31.9) Dental anxiety No 19 (35.8) 34 (64.2) <0.001 18 (34.6) 34 (65.4) 0.002 Yes 79 (79.0) 21 (21.0) 61 (61.0) 39 (39.0) NEED FACTORS Self-perceived dental treatment need No 18 (36.7) 31 (63.3) <0.001 13 (27.1) 35 (72.9) <0.001 Yes 88 (78.6) 24 (21.4) 73 (65.2) 39 (34.8) Oral problems (present) No 11 (45.8) 13 (54.2) 0.024 8 (36.4) 14 (63.6) 0.078 Yes 95 (69.3) 42 (30.7) 78 (56.5) 60 (43.5) Oral problems (past) No 36 (57.1) 27 (42.9) 0.062 31 (50.8) 30 (49.2) 0.560 Yes 70 (71.4) 28 (28.6) 55 (55.6) 44 (44.4) Oral health beliefs No 23 (62.2) 14 (37.8) 0.591 14 (38.9) 22 (61.1) 0.042 Yes 83 (66.9) 41 (33.1) 72 (58.1) 52 (41.9) 51 Self-reported oral health Fair/poor 11 (32.4) 23 (67.6) <0.001 8 (23.5) 26 (76.5) <0.001 Excellent/very good/good 95 (75.4) 31 (24.6) 78 (62.4) 47 (37.6) Importance of oral health Not important/don’t know 25 (100.0) 0 (0.0) < 0.001 19 (22.4) 6 (88.1) 0.014 Important 80 (59.3) 55 (40.7) 66 (77.6) 68 (91.9) aChi Square Test/Fisher’s Exact Test Note: The numbers referring to each variable and its respective answer pertain to those participants who provided responses. Altogether, missing data was present in more than half of the questionnaires, and in various questions. The percentages shown in this table represent row percentages. 52 Table 4.3. Results from the hierarchical logistic regression model for the association between the Andersen and Newman (A&N) model predisposing, enabling and need factors and dental visit in the last year in a sample of people living with HIV Outcome: Dental visit within the last year (0 = No, 1 = Yes) Predictors Model 1 Overall: p<0.001 Nagelkarke R2=0.412 OR (95%CI) Tolerance Model 2 Overall: p<0.001 Nagelkarke R2=0.613 OR (95%CI) Tolerance (predictors) Model 3 Overall: p<0.001 Nagelkarke R2=0.734 OR (95%CI) Tolerance (predictors) PREDISPOSING FACTORS Age < 50 years 1 0.797 1 0.808 ≥50 years 2.3 (1.0; 5.0) 2.1 (0.8; 5.4) Gender Males 1 0.840 1 0.801 Females 0.3 (0.1; 1.1) 1.8 (0.4; 9.0) Born in Canada No 1 0.744 Yes 1.0 (0.3; 3.3) Higher education (College+) No 1 0.808 Yes 1.2 (0.5; 3.5) White No 1 0.799 1 0.830 1 0.925 Yes 0.4 (0.1; 1.1) 0.2 (0.1; 0.9) 0.2 (0.1; 0.8) Refugee No 1 0.737 Yes 4.2 (0.4; 46.8) General Health No 1 0.781 1 0.689 Yes 2.7(0.9; 8.5) 1.0 (0.2; 5.3) Mental Health Conditions No 1 0.647 1 0.670 Yes 2.7 (0.8; 9.0) 3.2 (0.8; 13.2) Medical conditions due to HIV (current) No 1 0.724 1 0.774 Yes 1.9 (0.6: 6.2) 0.5 (0.1; 1.8) Medical conditions due to HIV (past) No 1 0.657 Yes 0.3 (0.1; 0.8) HIV Medications No 1 0.814 Yes 0.3 (0.1; 1.9) Diagnosed with HIV < 5 years ago 1 0.734 > 5 years ago 0.7 (0.1; 3.6) ENABLING FACTORS Employment 1 0.669 Unemployed 0.4 (0.1; 1.6) Employed Income 53 <20.000 CAD 1 0.604 > 20.000 CAD 2.2 (0.5; 10.8) Experienced discrimination by dental professionals No 1 0.815 Yes 0.8 (0.3; 2.2) Living Difficulties No 1 0.694 Yes 0.2 (0.0; 1.9) Dental Insurance No 1 0.631 Yes 2.8 (0.8; 11.7) Social support No 1 0.848 Yes 0.2 (0.0; 3.1) Having a family doctor No 1 0.883 1 0.926 Yes 12.3 (0.6; 250.0) 2.5 (0.2; 26.0) Having a regular dentist No 1 0.781 Yes 3.1 (0.7; 12.9) Dental anxiety No 1 0.741 1 0.748 Yes 0.1 (0.0; 0.4) 0.2 (0.1; 1.0) Avoiding treatment due to cost No 1 0.896 Yes 0.8 (0.2; 2.9) NEED FACTORS Self-perceived treatment needs No 1 0.549 Yes 0.3 (0.1; 1.7) Oral problems (present) No 1 0.762 Yes 1.1 (0.1; 8.8) Oral problems (past) No 1 0.790 Yes 0.6 (0.1; 2.8) Oral health beliefs No 1 0.849 Yes 1.3 (0.3; 5.5) Self-reported oral health Poor/Fair 1 0.581 Good/Very good/Excellent 1.1 (1.3; 1.0) Reason for dental visit Emergency 1 0.765 Regular check-ups/Treatments 23.1 (6.1; 87.2) Importance of oral health Not important/don’t know 1 0.848 Important 1.6 (0.2; 12.7) 54 Table 4.4. Results from the hierarchical logistic regression for the association between the Andersen and Newman (A&N) model predisposing, enabling and need factors and reason for last dental visit in a sample of people living with HIV Outcome: reason for the dental visit (0:emergency, 1: check-up) Predictors Model 1 Overall: p<0.001 Nagelkarke R2=0.260 OR (95%CI) Tolerance Model 2 Overall: p<0.001 Nagelkarke R2=0.427 OR (95%CI) Tolerance (predictors) Model 3 Overall: p<0.001 Nagelkarke R2=0.612 OR (95%CI) Tolerance (predictors) PREDISPOSING FACTORS Age < 50 years 1 0.804 ≥50 years 0.6 (0.3; 1.3) Gender Males 1 0.865 1 0.835 Females 0.2 (0.1; 0.6) 0.9 (0.3; 2.5) Born in Canada No 1 0.795 Yes 0.6 (0.2; 1.8) Higher education (College+) No 1 0.896 Yes 1.6 (0.6; 4.1) White No 1 0.774 1 0.939 Yes 0.4 (0.1; 1.0) 0.6 (0.2; 1.5) Refugee No 1 0.842 Yes 3.7 (0.4; 33.8) General Health No 1 0.812 Yes 1.0 (0.4; 2.8) Mental Health Conditions No 1 0.692 Yes 1.0 (0.3; 3.0) Medical conditions due to HIV (current) No 1 0.745 Yes 0.7 (0.2; 2.1) Medical conditions due to HIV (past) No 1 0.683 Yes 0,6 (0.2; 1.8) HIV Medications No 1 0.814 Yes 1.4 (0.2; 9.1) Diagnosed with HIV < 5 years ago 1 0.754 > 5 years ago 3.0 (0.5; 16.5) ENABLING FACTORS Employment Unemployed 1 0.802 Employed 0.5 (0.2; 1.3) Income < 20.000 CAD 1 1 55 ≥ 20.000 CAD 3.1 (1.0; 9.9) 0.758 1.7 (0.8; 3.5) 0.884 Experienced discrimination by dental professionals No 1 0.819 Yes 0.8 (0.3; 1.9) Living Difficulties No 1 0.728 Yes 0.7 (0.1;3.2) Dental Insurance No 1 0.742 1 0.877 Yes 2.4 (0.9;6.4) 1.8 (0.7; 4.6) Social support No 1 0.924 Yes 0.7 (0.2; 3.0) Having a regular family doctor No 1 0.902 Yes 1.3 (0.2; 6.9) Having a regular dentist No 1 0.793 1 0.711 Yes 7.2 (2.2; 23.1) 3.7 (1.1; 12.6) Dental anxiety No 1 0.861 Yes 0.6 (0.2; 1.7) Avoiding treatment due to cost No 1 0.832 Yes 0.5 (0.2; 1.3) NEED FACTORS Self-perceived treatment needs No 1 0.538 Yes 0.4 (0.1; 1.6) Oral problems (present) No 1 0.748 Yes 1.3 (0.3; 6.8) Oral problems (past) No 1 0.775 Yes 1.9 (0.6; 6.7) Oral health beliefs No 1 0.856 Yes 0.3 (0.1; 1.0) Self-reported oral health Poor/Fair 1 0.635 Good/Very good/Excellent 0.4 (0.1; 1.3) Regular dental visit No 1 0.595 Yes 21.6 (6.1; 76.5) Importance of oral health Not important/Don’t know 1 0.812 Important 0.6; (0.2; 2.0) 56 4.5 Discussion The present Chapter examined predictors of dental care utilization in a sample of PLHIV in BC, Canada. The predictors were selected based on the Andersen and Newman model of health service utilization (Andersen et al., 2005), a widely used model to explore the factors and conditions that either facilitate or impede health care utilization (Gelberg et al., 2000; Andersen et al., 2005; Ramraj et al., 2012; Babitsch et al., 2012; Jessani et al., 2016). The potential predictors represented three domains, namely predisposing, enabling and need factors, and were associated bivariately and multivariately with the following outcomes: timing of the last dental visit, and the reason for the last dental visit. Around a third of the 186 participating PLHIV visited a dental professional within the last year, which is lower than the average Canadian (CHMS, 2011; Ramraj et al., 2012). For almost half of the participants, the main reason for the dental visit was an emergency and almost half reported unmet dental treatment needs, a similar pattern found by Fox et al. (2012) when studying access to dental care in PLHIV, by Jessani et al. (2016) when studying access to dental care by vulnerable pregnant women, and by Bedos et al. (2003) when discussing the lack of access to dental care by those living on welfare assistance. Although with similar patterns of dental visits observed in other underserved groups, infrequent dental care is perhaps more significant for PLHIV because they also face stigma and discrimination by dental care providers (Donnelly at al., 2016; Fox et al., 2012) The significant predisposing factors that were associated with having a dental visit within the last year, and reasons for that dental visit, were age, male gender, longer residency in Canada, better general health status, taking HIV medications, and not having a past medical condition due to HIV. Similar determinants of dental service utilization were reported for the 57 general Canadian population by the Canadian Oral Health Measures Survey, where people born in Canada or people who had lived in Canada longer than five years were more likely to visit a dental professional compared to those who had lived in Canada for a shorter time (CHMS, 2011). These findings support the importance of predisposing factors as stated in the A&N model of dental services utilization. Grembowski and colleagues (1989) suggested that a number of behavioural, cultural, geographic, and structural factors that might influence an individual's ability to obtain care, many of which were found to be significantly associated with access to dental care in this present study. Similar to previous reports on PLHIV (Rajabun et al., 2011; Tomar et al., 2011; Fox et al., 2012), the following enabling predictors of last dental visit and reasons for a dental visit were identified: having a higher income, dental insurance, a family doctor, a regular dentist, not having dental anxiety, avoiding treatment due to cost and not having experienced discrimination by a dentist, which are also key factors in dental care utilization by other Canadians (CHMS 2011; Ramraj et al., 2012). In fact, according to the A&N model, these enabling factors can play an essential role in increasing one’s access to dental care. More than half of the study participants reported not having dental insurance and a regular dentist. Conversely, as demonstrated by the CHMS, around three out of four Canadians (68.0%) have some sort of dental coverage, while the majority of Canadians reported having employer-sponsored dental insurance. In this study, less than one quarter of the participants reported having a full-time job or employer-sponsored dental insurance, which shows a significant financial disparity between the general Canadian population and PLHIV. Hence, more than two thirds of the respondents had an annual income of less than $20,000 CAD, which is below the poverty line of another 4.8 million Canadians (Statistics Canada, 2016). In addition, more than half of the respondents 58 reported having difficulties related to food, housing, transportation, clothing, dental coverage, and other important resources; housing unaffordability alone for British Columbians has been on the news for the past few years. Indeed, the literature indicates that a population living with financial and social disparity can neglect their dental care in order to meet basic living necessities (Marx et al., 1997; Marcus et al., 2005). Possibly, it was due to these difficulties and competing priorities that the participants from this study did not have a dental visit within the last year. The most significant predictor in multivariate analysis was anxiety, a well-known factor preventing people from seeking dental care regardless of age, race or socio-economic status (Eitner et al., 2006; Armfield et al., 2013). Another important finding in the present study was that more than half of the participants experienced stigma and discrimination by their dental professionals because of their HIV status. HIV-related stigma and discrimination by dental care providers have been commonly reported in the literature. For example, more than 60% of PLHIV interviewed by Patel and colleagues expected to be treated differently or stigmatized by their oral health care providers (Patel et al., 2015). Similar findings were reported by Donnelly and colleagues, where respondents mentioned being scheduled at the end of the day for dental appointments, and clinicians double-gloving and wearing two masks, or even refusing to treat them altogether (Donnelly et al., 2016). These are behaviours of stigmatization and discrimination against PLHIV, which can further lead to mistrust and anxiety towards dental care providers (Patel et al., 2015; Brondani et al., 2012). Henceforth, having a regular dentist was a strong predictor of dental service utilization. According to Rajabuin and colleagues, PLHIV tend to report more frequent visits to a dental professional who is more sensitive to the oral care needs of patients with HIV (Rajbuin et al., 2011). This aligns with the principles of trauma-informed dental care 59 where care providers are well aware of their patient’s traumatic experiences such as an HIV diagnosis (Raja et al., 2014). In the case of the present study, we suggest that dental professionals should be trained to demonstrate strong communication skills with respectful language, engage in inter-professional collaboration, and incorporate cultural safety strategies during the provision of dental care to their patients. The majority of participants of this study reported treatment needs and dental problems, as many other Canadians do (CHMS, 2011, Ramraj et al., 2012). The most common dental problems were tooth sensitivity, bleeding gums and toothache, and treatment need for fillings and cleanings. These findings are consistent with other vulnerable groups such as the homeless population (Daly et al., 2010; Mago et al., 2018) and pregnant women (Jessani et al., 2016). Despite these self-reported dental problems, the majority of PLHIV did not access timely dental care, and when they did, it was for a dental emergency only, as found by other studies. This could be the reason why PLHIV in this study were more likely to rate the health of their mouth as fair or poor: if the reason for their visit is emergency, most of their perceived regular treatment needs likely went unmet. Without proper access to dental care for HIV-infected individuals with compromised immune systems, dental conditions such as oral opportunistic infections remain, and dental decay and periodontal disease can remain undiagnosed or may progress and become harder and more expensive to treat. This further impacts the quality of life of PLHIV (McCarthy et al., 1992; Weinert et al., 1996; Tomar et., 2011). The A&N model of health service utilization was employed to identify the most significant predictors of dental care use in this study sample. Multivariate modelling revealed that the most significant predictors of dental service utilization were: white race, dental anxiety, self-reported oral health status, and emergent reasons for the dental visit. These findings were similarly 60 reported in various studies employing the A&N model among other populations, with or without PLHIV (Ramraj et al., 2012; Jessani et al., 2016, Fox et al., 2012). For this study, use of the A&N model of health service utilization was found to be useful to understand the dental care utilization of PLHIV. 4.6 Limitations Findings from this study should be interpreted with caution. The only recruitment strategy employed was an announcement in the e-newsletters of relevant organizations, such as the Positive Living Society of BC and Pacific AIDS Network Canada, neither of which permitted any direct contact with their members due to their members’ privacy and confidentiality. This selection strategy likely generated biases in recruiting only those members with internet access and who signed up to receive the monthly e-newsletters. Although it is unknown if the same participants responded to the survey more than once, the relatively low sample size and incomplete questionnaires did not allow more sophisticated analyses, and therefore most of the non-significant predictors in the study presented with a relatively wide 95% confidence interval. Given this relatively small sample size, this is not surprising as the width of the confidence interval depends to a large extent on the sample size (Cochrane Handbook, 2011). The LHR required all the variables to be ‘hierarchically’ included in the subsequent models, not just the ones that are significant. But because of the number of missing responses in some questions, none of the three assumptions for LHR (variance, collinearity and CI) were met. As a result, I only included those variables with significate values obtained after adjusting the variance. Although a pilot study was conducted, it cannot be assured that participants accurately interpreted the survey questions and may explain why not all the participants answered all the questions. 61 4.7 Conclusion This is the first study to explore the pattern of dental service utilization among the HIV-positive Canadian population using the A&N model. Several predisposing, enabling and need factors were associated with both the timing of the last dental visit and the reasons for the visit, which is shared by other marginalized and vulnerable Canadians. Most of the participants did not seek dental care within the last year, and of the participants who did, more than half reported that it was for an emergency. Also, in addition to various psychosocial barriers, a significant number of the respondents reported experiencing stigma and discrimination from their oral care providers. This highlights the need to create more ‘safe dental homes’ for PLHIV. This could prevent serious dental conditions that can impact the overall health and quality of life of PLHIV, while also avoiding additional financial burden for this marginalized population. Next chapter With the identification of the predisposing, enabling and need factors of the A&N model and their associations with the pattern of dental service utilization within a sample of PLHIV in British Columbia, Chapter 5 of this dissertation explores the third research objective: to identify associations among self-reported oral health status and dental treatment needs utilizing the A&N model of health service utilization. 62 Chapter 5: Unmet Dental Treatment Needs of People Living with HIV in British Columbia, Canada 5.1 Summary Objectives. To identify Andersen and Newman’s (A&N) predisposing, enabling and need factors of service utilization associated with self-reported oral health status and dental treatment needs in a sample of people living with HIV/AIDS (PLHIV) in British Columbia (BC), Canada. Methods. Participants were identified via the e-newsletters of two HIV-organizations. They responded anonymously to a self-reported, 40-item online questionnaire to explore the patterns of dental service utilization. In order to be included, participants had to meet the following inclusion criteria: 1) be at least 19 years old; 2) self-identify as HIV-positive; 3) be able to provide consent and be willing to voluntarily participate in the study; 4) be residing in British Columbia; and 5) be able to proficiently respond to the questions in English. Following the descriptive statistics, associations between A&N model factors and the main outcome variables (self-reported oral health status and self-reported dental treatment needs) were evaluated using simple and multiple logistic regression analyses. Results. Out of 600 PLHIV who received the invitation to participate via the two HIV organizations, a total of 210 people responded to the questionnaire and 186 met the inclusion criteria. The majority of the respondents were male (n = 118; 63.9%), born in Canada (n = 116; 68.2%) and Caucasian (n = 84; 54.5%). More than half (n = 88; 54.3%) reported discrimination by dental professionals. Nearly three quarters of respondents (n = 125; 73.1%) reported not having a regular dentist and one half (n = 83; 50.9%) avoided dental treatment due to cost. Approximately 40% (n = 74) of participants rated the health of their mouth as fair/poor and more 63 than half (n = 112; 60.2%) reported having one or more unmet dental treatment need. The association of general health status (p = 0.003) and the timing of the HIV diagnosis (p = 0.034) were statistically significant with self-reported oral health. The experience of being discriminated against by dental professionals (p = .001), having fair/poor general health (p = .006), and suffering from past and current medical conditions due to HIV (p < .001) were significantly associated with self-reported treatment need. In multiple logistic regression analysis, having fair/poor general health, experiencing living difficulties, having a regular dentist, feeling anxious, and avoiding dental treatment due to cost were the strongest predictors of unmet dental treatment needs in this sample of PLHIV. Conclusion. From the bivariate and multivariate analysis, several predisposing, enabling and need factors from the A&N model were associated with self-reported oral health status and unmet dental treatment needs of PLHIV. Results from this study highlight the need for improving access to affordable dental care to address the unmet oral health needs of PLHIV. 64 5.2 Introduction There have been great advancements towards managing the bio-medical complications associated with Human Immunodeficiency Virus (HIV) since the early days of the epidemic, but without considering oral health care as part of this management. Consequently, people living with HIV (PLHIV) often experience poor oral health (Rajabuin et al., 2011; Reznik, 2004; Cherry-Peppers et al., 2003) usually exacerbated by xerostomia (dry mouth) that is related to a reduced salivary flow and one of the most common side effects of antiretroviral therapy (ART) (Reznik., 2004). Low or nonexistent salivary flow makes the oral cavity more susceptible to dental caries and periodontal infections (Dios et al., 2000; Tappuni et al., 2001). Several studies have reported unmet dental treatment needs amongst PLHIV (Marx et al., 1997; Bonuck et al., 1996). Hence, it is believed that low levels of dental service utilization among PLHIV exist due to accessibility, affordability and other compounding factors (Rajabuin et al., 2011; Fox et al., 2012), similar to other vulnerable groups, including pregnant women (Jessani et al., 2016) and the homeless population (Mago et al., 2017). One way to examine factors associated with oral health status and unmet dental treatment needs `in a more systematic manner is via the Andersen and Newman (A&N) model of health service utilization (Andersen et al., 2005), which classifies factors as predisposing, enabling, and needs. The A&N model has been extensively used to understand patterns of service utilization in primary and secondary health care services, outpatient services, mental health services, and dental services (Babitsch et al., 2012). A systematic review by Babitsch and colleagues highlighted the use of this model to predict the utilization of health care services by various marginalized populations such as immigrants and refugees, homeless veterans, prison inmates and other marginalized population groups (Babitsch et al., 2012). Although there are other 65 similar models (e.g., Precede–Proceed model for service evaluation by Green et al., 1974), the A&N model appears to be simple yet broad enough to explore factors associated with the oral health of PLHIV while still facilitating the identification of the most significant psychosocial and personal factors that could impact one’s health care needs when considering the utilization of health services (Andersen et al., 2005). In the A&N model, predisposing factors include demographic variables that determine one’s ability to seek health services; enabling factors include resource variables that help people to seek healthcare when needed; and need factors include clinical and self-reported needs and influence health care-seeking behaviour (Andersen et al., 2005). This study aimed to identify the predisposing, enabling and need factors of PLHIV in British Columbia associated with self-reported oral health status and unmet dental treatment needs utilizing the A&N model of health service utilization. There is a need to identify the oral health needs and oral health status of PLHIV so that their dental problems can be addressed in a timely manner. The early identification of dental problems may have a positive impact on the systemic health of PLHIV, thereby preventing the development of oral opportunistic infections, which can contribute to further health problems (Rajabuin et al., 2011). There was no data on the oral health care needs or oral health status of PLHIV in British Columbia or Canada before this study. 5.3 Method and materials The present cross-sectional study was approved by the University of British Columbia’s Behavioural Ethics Board (No H16-00735-A002). 5.3.1 Recruitment of Participants A collaborative agreement was made between the Positive Living Society of British Columbia (PLSBC), the Pacific AIDS-Network, and the University of British Columbia (UBC) 66 Faculty of Dentistry. Several other BC organizations were approached, but only PLSBC and Pacific AIDS-Network agreed to participate. Invitations to participate and a link to the online questionnaire were sent via quarterly e-newsletters to more than 600 registered members of these two HIV organizations (Appendix E). Potential participants were invited to click on a link where they were directed to an informed consent agreement (Appendix F). 5.3.2 Data collection instruments The participants were then directed to a 40-item, self-reported questionnaire (Appendix G). This questionnaire was based on the questions from the CHMS 2011, while new questions were included to explore the predictors associated with self-reported oral health status and unmet dental treatment needs. The A&N model of health service utilization served as a theoretical model to organize this questionnaire. The complete 40-item questionnaire was then piloted with 10 PLHIV and was subsequently updated for the main study based on their review and feedback regarding the comprehension and clarity of the questions. Upon electronic acceptance, completion of this questionnaire took approximately 15 minutes. Data were collected from June to December, 2016. A total of 210 PLHIV responded to the online questionnaire and 186 met the inclusion criteria as follows: 1) at least 19 years old; 2) self-identified as HIV-positive; 3) able to provide consent and willing to voluntarily participate in the study; 4) resident of British Columbia; and 5) able to proficiently respond to the questions in English. Twenty-four of the respondents did not meet one or more of the above inclusion criteria and their answers were excluded from the data set before analysis. 67 5.3.3 Study Variables 5.3.3.1 Outcome Variables The study included two outcome variables: self-reported oral health status and self-reported need for dental treatment. Self-reported oral health status was categorized into a binary variable of 0 = poor or fair, and 1 = good, or very good, or excellent. Self-reported need for dental treatment was categorized into a binary variable of 0 = no dental treatment, and 1 = the presence of one or more of the following: toothache; sensitivity in teeth when consuming hot or cold foods or drinks; other pain in the mouth; pain around jaw joints; persistent dry mouth; persistent bad breath; white patch on the tongue; hole in teeth; excessive bleeding gums; loosening of teeth; swelling around neck; severe mouth pain at night; severe tooth pain at night; and/or persistent ulcers (Appendix F). 5.3.4 Independent Variables The independent variables (as the predictors) were grouped according to the A&N model of dental service utilization and its three domains of variables: predisposing (age, number of years living in Canada, education, ethnicity, refugee status, general health, mental health conditions, time of HIV diagnosis, HIV medications, current medical conditions due to HIV and past medical conditions due to HIV), enabling (employment status, income, avoiding dental treatment due to cost, living difficulties, dental insurance, social support, having a family doctor, having a regular dentist, experienced discrimination by a dental professional and dental anxiety) and need factors (last dental visit, reason of last dental visit, current oral health problems, past oral health problems and self-reported oral health beliefs) (Appendix F). 68 5.3.5 Statistical Analyses The data were analyzed with IBM SPSS® Version 22.0 software and the threshold for statistical significance was set at p < 0.05. Univariate statistics were used to describe the distribution of study variables using their original categories. Original variables were dichotomized for bivariate (Chi Square Test/Fisher’s Exact Test) and multivariate analyses (hierarchical logistic regression). As explained in Chapter 4, frameworks like the A&N provided guidance for using the multivariate analyses proposed and also aided me in interpreting the results in light of the social and biological aspects of HIV infection (Victora et al., 1997). Each of the hierarchical logistic regressions, one for each study outcome, included three consecutive models in which the constant was not included. Model 1 tested the predisposing factors. The predisposing factors that were associated with an outcome at the p < 0.10 level were subsequently introduced into Model 2, which tested the enabling factors. Model 3 tested the need factors, and in addition included the pre-selected predictors (p < .10) from Model 2. The Nagelkerke R2 and the overall significance of the model were used as statistical indicators of the overall fit of regression models. The assumption of independence among predictors in all models was tested by multicollinearity diagnostics. The threshold for the tolerance values that fulfilled the assumption of independence among multiple predictors was set at 0.5 or higher. 5.4 Results The present study analyzed two outcomes related to the oral health of PLHIV in British Columbia: self-reported oral health status and self-reported need for dental treatment. 69 5.4.1.1 Univariate Analyses About 40% of the respondents (n = 74) rated the health of their mouths as fair/poor, while 58.9% of respondents (n = 109) perceived their oral status as good/very good or excellent. Amongst the ones who reported the health of their mouths as good/very good or excellent, 57% had consulted a dental professional within the last year, but mostly for emergency reasons. For self-reported dental treatment needs, respondents were asked to select from a list of 26 different dental conditions. Reports of having one or more of these conditions were equated to having unmet dental treatments; almost 2/3 of the respondents (n = 112; 60.2%) perceived having one or more unmet dental treatment need. 5.4.1.2 Bivariate analyses 5.4.1.2.1 Outcome 1: Self-reported oral health status Table 5.1 presents the bivariate analysis of the predisposing factors, and shows that ‘general health’ (p = 0.003) and ‘timing of HIV diagnosis’ (p = 0.034) were significantly associated with self-reported oral health. Table 5.3 presents the findings related to the need factors and shows that self-reported dental treatment need (p < 0.001), past oral problems (p = 0.004), having a dental visit within the last year (p < 0.001), reason for the dental visit (p < 0.001), and self-reported importance of oral health (p = 0.004) were significantly associated with self-reported status of oral health. 5.4.1.2.2 Outcome 2: Self-reported unmet dental treatment needs The four predisposing factors, which included experienced discrimination by dental professionals (p = 0.001), general health (p = 0.006), and current and past medical conditions due to HIV (p < 0.001), were strongly associated with self-reported dental treatment need (outcome 2). Table 5.2 shows the findings related to enabling factors and indicates that employment 70 (p = 0.019), having living difficulties (p = 0.004), having a regular dentist (p = 0.001), dental anxiety (p = 0.001), and avoiding dental treatment due to cost (p = 0.005) were significantly associated with self-reported dental treatment need. All need factors examined were significantly associated with self-reported dental treatment needs (Table 5.3). 5.4.1.3 Multivariate Analyses (Hierarchical Logistic Regressions) Two logistic hierarchical regression (LHR) analyses were done, one for each of the study outcomes. The LHR are shown in Tables 5.4 and 5.5, respectively. 5.4.1.3.1 Outcome 1: Self-reported oral health status Table 5.4 presents the results related to outcome 1, self-reported oral health status in three LHR models with the following sequence of predictor testing. Model 1 included only predisposing factors; Model 2 included enabling factors, and the predictors from Model 1 that were significant at the p < 0.10 level. Model 3 tested need factors and also included factors from Model 2 that were significant at p < 0.10. The assumption of independence among multiple predictors was fulfilled in all multivariate models as indicated by tolerance values greater than 0.5. A total of 53.8% (Nagelkerke R2 = 0.538, p < 0.001) of the variation in self-reported oral health was explained by a set of predisposing factors (Table 5.4). In Model 1, the factors ‘experienced discrimination by dental professionals’, ‘status of general health’, and ‘past medical conditions due to HIV’ were significant at p < 0.10, and these predictors were subsequently added to Model 2. Model 2 (as shown in Table 5.4) included enabling factors in addition to the preselected predisposing factors from Model 1. The explained variance in Model 2 was 63.9%, and the predictors ‘general health’, ‘having living difficulties’, ‘having a regular dentist’, ‘dental anxiety’, and ‘avoiding dental treatment due to cost’ were significantly associated (p < 0.10) with the outcome of self-reported oral health. The final model (Model 3 in table 5.4) tested need 71 factors in addition to the preselected factors from Model 2 (p < 0.10). Model 3 included one predisposing factor (‘general health’), four enabling factors (‘living difficulties’, ‘having a regular dentist’, ‘dental anxiety’, ‘avoiding dental treatment due to cost’) and seven need factors (shown in Table 5.4). These predictors jointly explained a total of 68.0% of the variance in self-reported oral health. 5.4.1.3.2 Outcome 2: Self-reported unmet dental treatment needs Three models of LHR were also tested for outcome 2 (‘self-reported dental treatment need’) and are shown in Table 5.5. Model 1 (predisposing factors) was significant and predictors jointly explained a total of 48.5% of the variation in self-reported dental treatment need. In Model 1, three predictors (‘gender’, ‘general health’, ‘past medical conditions due to HIV’) were significant at the p < 0.10 level; these predictors were added to Model 2 for enabling factors. The Model 2 (in Table 5.5) predictors jointly explained 48.6% of the variance in the dental treatment need-related outcome, and two predictors (‘employment status’ and ‘dental anxiety’) were significant at p < 0.10. Model 3 (Table 5.5) included two enabling predictors and a total of seven predictors from the need factors. Model 3 was also significant (p < 0.001) and a total of nine predictors jointly explained 62.8% of the variance in self-reported dental treatment need (Table 5.5). 72 Table 5.1. Frequency distribution of the Andersen and Newman (A&N) predisposing factors and self-reported oral health unmet dental treatment needs among a sample of people living with HIV Self-reported Oral Health Self-reported treatment need Fair/poor N=186 (%) Excellent N=186 (%) p-valuea No N=186 Yes N=186 (%) p-valuea Age 19-40 years 11 (25.6) 32 (74.4) 0.829 16 (35.6) 29 (64.4) 0.986 41-55 years 18 (24.0) 57 (76.0) 29 (35.8) 52 (64.2) 56+ years 5 (19.2) 21 (80.8) 10 (35.7) 18 (64.3) Gender Males 20 (20.2) 79 (79.8) 0.790 39 (36.8) 67 (61.5) 0.227 Females 13 (25.0) 39 (75.0) 15 (27.3) 40 (36.7) Other 1 (20.0) 4 (80.0) 3 (5.3) 2 (1.8) In Canada < 10 years 4 (17.4) 19 (82.6) 0.542 7 (28.0) 18 (72.0) 0.586 ≥ 10 years 8 (29.6) 19 (70.4) 12 (41.4) 17 (58.6) Born in Canada 23 (21.3) 85 (78.7) 40 (34.5) 76 (65.5) Education < High school 1 (3.0) 18 (15.4) 0.131 3 (15.8) 16 (84.2) 0.215 High school 12 (36.4) 44 (37.6) 20 (34.5) 38 (65.5) College+ 20 (60.6) 55 (47.0) 29 (36.7) 50 (63.3) Ethnicity White 15 (19.7) 61 (80.3) 0.469 23 (47.9) 61 (59.8) 0.297 Aboriginal 4 (14.8) 23 (85.2) 12 (25.0) 16 (15.7) Other 10 (27.0) 27 (73.0) 13 (27.1) 25 (24.5) Refugee status No 27 (20.0) 108 (80.0) 0.245 51 (34.7) 96 (65.3) 0.460 Yes 6 (31.6) 13 (68.4) 8 (42.1) 11 (57.9) Discrimination by dental professionals No 22 (26.5) 61 (73.5) 0.401 38 (43.2) 50 (56.8) 0.001 Yes 10 (13.9) 62 (86.1) 14 (18.9) 60 (81.1) General health Good 3 (6.5) 43 (93.5) 0.003 8 (17.0) 39 (83.0) 0.006 Poor 32 (28.6) 80 (71.4) 44 (38.3) 71 (61.7) Mental health conditions No 21 (22.8) 71 (77.2) 31 (33.3) 62 (66.7) 73 Yes 12 (18.5) 53 (81.5) 0.556 22 (31.9) 47 (68.1) 0.491 Current medical condition due to HIV No 27 (25.5) 79 (74.5) 0.304 42 (38.9) 66 (61.1) < 0.001 Yes 8 (17.4) 38 (82.6) 10 (20.4) 39 (79.6) Past medical condition due to HIV No 19 (29.2) 46 (70.8) 0.079 29 (44.6) 36 (55.4) < 0.001 Yes 16 (18.2) 72 (81.8) 21 (23.3) 69 (76.7) HIV Medications No 2 (25.0) 6 (75.0) 0.578 4 (50.0) 4 (50.0) 0.241 Yes 32 (22.5) 110 (77.5) 46 (31.7) 99 (68.3) Diagnosed with HIV < 5 years ago 8 (40.0) 12 (60.0) 0.034 8 (40.0) 12 (60.0) 0.281 ≥ 5 years ago 25 (18.5) 110 (81.5) 39 (28.7) 97 (71.3) aChi Square Test/Fisher’s Exact Test Note: The numbers referring to each variable and its respective answer pertain to those participants who provided responses. Altogether, missing data was present in more than half of the questionnaires, and in various questions. The percentages shown in this table represent row percentages. 74 Table 5.2. Frequency distribution of the Andersen and Newman (A&N) enabling factors and self-reported oral health and unmet dental treatment needs among a sample of people living with HIV Self-reported Oral Health Self-reported treatment need Fair/poor N=186 (%) Excellent N=186 (%) p-valuea No N=186 Yes N=186 (%) p-valuea Employment Unemployed 9 (13.0) 60 (87.0) 0.019 19 (26.0) 54 (74.0) 0.108 Employed 24 (27.9) 62 (72.1) 32 (36.4) 56 (63.6) Income CAD$ < 5,000 4 (12.5) 28 (87.5) 0.131 7 (21.9) 25 (78.1) 0.007 5,000-20,000 18 (22.2) 63 (77.8) 23 (27.1) 62 (72.9) >20,000 13 (32.5) 27 (67.5) 21 (50.0) 21 (50.0) Living difficulties No 9 (52.9) 8 (47.1) 0.004 14 (66.7) 7 (33.3) 0.001 Yes 26 (18.7) 113 (81.3) 42 (29.4) 101 (70.6) Dental insurance No 11 (16.9) 54 (83.1) 0.122 17 (24.6) 52 (75.4) 0.039 Yes 24 (26.1) 68 (73.9) 37 (38.9) 58 (61.1) Social support No 1 (5.9) 16 (94.1) 0.073 4 (22.2) 14 (77.8) 0.217 Yes 34 (23.9) 108 (76.1) 52 (34.7) 98 (65.3) Having a regular family doctor No 3 (23.1) 10 (76.9) 0.588 5 (35.7) 9 (64.3) 0.464 Yes 32 (22.2) 112 (77.8) 45 (31.0) 100 (69.0) Having a regular dentist No 17 (14.3) 102 (85.7) 0.001 34 (27.2) 91 (72.8) 0.002 Yes 17 (40.5) 25 (59.5) 24 (52.2) 22 (47.8) Dental anxiety No 20 (38.5) 32 (61.5) 0.001 29 (54.7) 24 (45.3) < 0.001 Yes 14 (41.0) 86 (86.0) 19 (19.0) 81 (81.0) Avoiding treatment due to cost No 24 (30.8) 54 (69.2) 0.005 32 (40.0) 48 (60.0) 0.033 Yes 14 (12.7) 69 (87.3) 21 (25.3) 62 (74.7) aChi Square Test/Fisher’s Exact Test Note: The numbers referring to each variable and its respective answer pertain to those participants who provided responses. Altogether, missing data was present in more than half of the questionnaires, and in various questions. The percentages shown in this table represent row percentages. 75 Table 5.3. Frequency distribution of the Andersen and Newman (A&N) need factors and self-reported oral health and unmet dental treatment needs among a sample of people living with HIV Self-reported Oral Health Self-reported treatment need Fair/poor N=186 (%) Excellent N=186 (%) p-valuea No N=186 Yes N=186 (%) p-valuea Self-reported oral health Fair/poor 26 (74.3) 9 (25.7) < 0.001 Excellent 24 (18.9) 103 (81.1) Self-reported treatment need No 26 (52.0) 24 (48.0) < .001 Yes 9 (8.0) 103 (92.0) Oral problems (current) No 8 (33.3) 16 (66.7) .109 33 (82.5) 7 (17.5) < 0.001 Yes 27 (19.6) 111 (80.4) 32 (23.3) 106 (76.8) Oral problems (past) No 21 (33.3) 42 (66.7) .004 49 (62.0) 30 (38.0) < 0.001 Yes 14 (14.1) 85 (85.9) 16 (16.2) 83 (83.8) Oral health beliefs No 5 (13.5) 32 (86.5) .127 30 (57.7) 22 (42.3) < 0.001 Yes 30 (24.0) 95 (76.0) 35 (27.8) 91 (72.2) Dental visit in the last year No 11 (10.4) 95 (89.6) < .001 18 (17.0) 88 (83.0) < 0.001 Yes 23 (42.6) 31 (57.4) 31 (56.4) 24 (43.6) Reason for the last dental visit Emergency 8 (9.3) 78 (90.7) < .001 13 (15.1) 73 (84.9) < 0.001 Regular visit 26 (35.6) 47 (64.4) 35 (47.3) 39 (52.7) Importance of oral health Not important/ DK 0 (0.0) 26 (100.0) .004 2 (7.7) 24 (92.3) 0.002 Important 34 (25.4) 100 (74.6) 50 (36.0) 89 (64.0) aChi Square Test/Fisher’s Exact Test Note: The numbers referring to each variable and its respective answer pertain to those participants who provided responses. Altogether, missing data was present in more than half of the questionnaires, and in various questions. The percentages shown in this table represent row percentages. 76 Table 5.4. Hierarchical logistic regression for the association between Andersen and Newman’s predisposing, enabling, and need factors and self-reported oral health in a sample of PLHIV Self-reported oral health (0 = fair/poor; 1 = excellent/very good/ good) Model 1 OR (95%CI) Nagelkarke R2=0.538 Tolerance Model 2 OR (95%CI) Nagelkarke R2=0.639 Tolerance Model 3 OR(95%CI) Nagelkarke R2=0.680 Tolerance PREDISPOSING FACTORS Age < 40 years 1 0.797 ≥ 40 years 1.5 (0.6;3.5) Gender Males 1 0.840 Females 1.0 (0.3;3.4) Born in Canada No 1 0.744 Yes 0.9 (0.3;3.5) Higher education (college+) No 1 0.799 Yes 1.2 (0.4;30.7) White race/ ethnicity No 1 0.737 Yes 1.5 (0.5;4.8) Refugee No 1 0.808 Yes 1.0 (0.1;24.8) Discrimination by dental professionals No 1 0.815 1 0.731 Yes 2.7 (0.9; 8.2) 0.7 (0.2; 2.5) General Health No 1 0.781 1 0.702 1 0.829 Yes 0.1 (0.0; 0.8) 0.1 (0.0; 0.8) 0.4 (0.1; 1.6) Mental Health Conditions No 1 0.647 Yes 0.6 (0.2; 2.1) Medical conditions due to HIV (current) No 1 0.724 Yes 1.0 (0.2; 4.4) Medical conditions due to HIV (past) No 1 0.657 1 0.888 Yes 3.3 (0.9; 1.7) 1.6 (0.6; 4.9) HIV Medications No 1 1 77 Yes 0.7 (0.1; 5.2) 0.784 3.7 (0.4; 39.9) 0.880 Diagnosed with HIV < 5 years ago 1 0.734 > 5 years ago 4.5 (0.8; 25.4) ENABLING FACTORS Employment Unemployed 1 0.850 Employed 0.6 (0.2; 1.8) Income ≤ 20,000 CAD 1 0.750 > 20,000 CAD 1.9 (0.6; 6.2) Living Difficulties No 1 0.791 1 0.867 Yes 4.8 (1.0;23.6) 3.7 (0.9;15.7) Dental Insurance No 1 0.800 Yes 1.6 (0.5; 5.3) Social support No 1 0.830 Yes 1.0 (0.1;11.7) Having a regular family doctor No 1 0.739 Yes 0.6 (0.1; 5.6) Having a regular dentist No 1 0.858 1 0.722 Yes 0.2 (0.1; 0.9) 0.7 (0.2; 2.4) Dental anxiety No 1 0.730 1 0.789 Yes 3.0 (1.0; 9.7) 1.7 (0.5; 5.3) Avoiding treatment due to cost No 1 0.804 1 0.856 Yes 3.5 (1.1; 11.5) 3.0 (1.0; 9.3) NEED FACTORS Self-reported treatment needs No 1 0.640 Yes 9.0 (2.8;28.5) Oral problems (present) No 1 0.742 Yes 0.7 (0.2; 3.3) Oral problems (past) No 1 0.719 Yes 1.9 (0.6; 6.4) Oral health beliefs No 1 0.871 Yes 0.2 (0.1; 0.9) 78 Regular dental visit No 1 0.429 Yes 0.7 (0.2; 2.4) Reason for dental visit For emergency 1 0.840 For regular check-ups and treatment 0.7 (0.2; 3.0) Importance of oral health Not important/don’t know 1 0.793 Important 1.3 (0.2; 7.6) CI = Confidence interval 79 Table 5.5. Hierarchical logistic regression for the association between Andersen and Newman’s predisposing, enabling, and need factors and self-reported treatment needs in a sample of PLHIV Self-reported treatment needs (0= none; 1= one or more) Model 1 OR (95%CI) Nagelkarke R2=0.485 Tolerance Model 2 OR(95%CI) Nagelkarke R2=0.486 Tolerance Model 3 OR (95%CI) Nagelkarke R2=0.628 Tolerance PREDISPOSING FACTORS Age < 40 years 1 0.787 ≥ 40 years 1.2 (0.5; 2.6) Gender Males 1 0.847 1 0.813 Females 3.2(0.9;11.3) 1.5 (0.5;4.4) Born in Canada No 1 0.779 Yes 1.4 (0.4; 4.8) Higher education (college+) No 1 0.788 Yes 1.4 (0.5;3.9) White No 1 0.808 Yes 0.8 (0.3; 2.2) Refugee No 1 0.866 Yes 0.2 (0.0; 3.8) Discrimination by dental professionals No 1 0.788 Yes 2.2 (0.8; 6.4) General health No 1 0.826 1 0.741 Yes 0.1 (0.0; 0.5) 0.9 (0.3; 2.8) Mental health conditions No 1 0.776 Yes 0.5 (0.1; 1.6) Medical conditions due to HIV (current) No 1 0.774 Yes 1.3 (0.3; 5.2) Medical conditions due to HIV (past) No 1 0.731 1 0.883 Yes 1.3 (0.3; 5.2) 2.0 (0.8; 5.1) HIV medications No 1 80 Yes 2.4(0.4;16.9) 0.777 Diagnosed with HIV < 5 years ago 1 0.762 > 5 years ago 1.5(0.2;10.1) ENABLING FACTORS Employment Unemployed 1 0.761 1 0.933 Employed 0.3 (0.1; 1.0) 0.4 (0.2; 1.0) < 20,000 CAD 1 0.781 > 20,000 CAD 1.5 (0.5; 4.7) Living difficulties No 1 0.734 Yes 2.1 (0.5; 8.3) Dental insurance No 1 0.758 Yes 0.8 (0.3; 2.1) Social support No 1 0.850 Yes 0.6 (0.1; 3.2) Having a regular family doctor No 1 0.909 Yes 0.9 (0.2; 5.0) Having a regular dentist No 1 0.770 Yes 0.6 (0.2; 1.8) Dental anxiety No 1 0.771 1 0.726 Yes 6.0 (2.3;16.2) 1.7 (0.6; 5.1) Avoiding treatment due to cost No 1 0.847 Yes 1.6 (0.6; 4.3) NEED FACTORS Oral problems (present) No 1 0.768 Yes 2.4 (0.6; 8.8) Self-reported oral health Poor/fair 1 0.749 Excellent/very good/ good 5.0 (1.9; 13.5) Oral problems (past) No 1 0.808 Yes 3.2 (1.1; 9.2) Oral health beliefs No 1 0.838 Yes 1.8 (0.5; 6.2) Regular dental visit 81 No 1 0.467 Yes 0.6 (0.1; 2.3) Reason for dental visit For emergency 1 0.521 For regular check-ups and treatment 0.3 (0.1; 1.2) Importance of oral health Not important/don’t know 1 0.800 Important 0.4 (0.1; 1.6) CI = confidence interval 82 5.5 Discussion This is the first study to examine the relationship between self-reported oral health status and self-reported unmet dental treatment needs of the Canadian HIV-infected population in light of predisposing, enabling and need factors according to the A&N model for service utilization in a sample of 186 PLHIV in BC. This study adds evidence on the staggering presence of oral health needs among PLHIV (Fox et al., 2012). The two predisposing factors that were significantly associated with self-reported oral health status were general health and time of HIV diagnosis. Several studies also reported that people who rate their general health as excellent, very good or good also tend to rate their oral health in a similar manner (Surgeon General Report: Oral Health in America, 2000; Fox et al., 2012), which was consistent with the self-reports in this study probably because of the known oral manifestations of HIV infection (Peppers et al., 2003). Contrary to other studies in the literature, participants in this study who were diagnosed with HIV more than five years ago were more likely to rate either their general health or their oral health as excellent, very good or good. A period of five years may provide a person time to adapt and cope with the stress caused by their initial HIV diagnosis, and consequently, the diagnosis may not permanently impact their perception of general well-being, including oral health. For others, however, coping and adaptation to such a diagnosis might never occur (Reeves et al., 1999). Significant predisposing factors for the second outcome variable, self-reported dental treatment needs, were: ‘experienced discrimination by dental professionals’, ‘general health’, ‘current medical conditions due to HIV’, and ‘past medical conditions due to HIV’. In a study conducted by Patel and colleagues (2015), the majority of participants anticipated being discriminated against by their dental professionals due to their HIV status, and were reluctant to 83 seek care despite having oral health problems. Similar issues of stigma and lack of understanding about HIV were recently reported by Donnelly and colleagues (2016), where respondents described being treated by a dental professional wearing double gloves and masks, were scheduled at the end of the day, or were not accepted at all due to their HIV status. This discriminatory behaviour can lead to anxiety and mistrust towards the dental profession and could possibly be a reason for the unmet dental needs reported by the participants as their oral health deteriorates (Patel et al., 2015). Consequently, the self-reported oral care experiences of the participants emphasize that the awareness and expertise of oral care providers on how to manage HIV patients still requires improvement (Surgeon General Report: Oral Health in America, 2000). Several enabling factors such as ‘employment vs. being unemployed’, ‘having living difficulties’, ‘not having a regular dentist’, ‘dental anxiety’, and ‘avoiding dental treatment due to cost’ were associated with self-reported dental treatment need. As reported among many other underserved populations, inability to afford care remains a major barrier to receiving dental care (Ramraj et al., 2012). Moreover, PLHIV face additional barriers such as housing and income difficulties. These competing priorities lead members of this vulnerable population to often neglect their oral health (Jeanty et al., 2012). More than half of respondents from this study reported unmet dental treatment needs in association with high dental treatment costs and/or not having dental insurance, as found by others (Mueller et al., 1998). Rajabuin and colleagues (2011) suggested that publicly funded community clinics could provide at least preventive and basic dental care for PLHIV, as well as for other underserved populations. Such public dental clinics could facilitate addressing the unmet dental needs of this vulnerable population, provide safe dental homes, and offer HIV-related resources for HIV-infected and non-infected 84 individuals (Rajabuin et al., 2011); such clinics are currently lacking in BC as demonstrated in Chapter 3. Yet the availability of services alone does not always increase the actual usage of these services, and some patients might still rely on alternative settings such as hospital emergency rooms to seek dental care (Brondani et al., 2017; Quinonez et al., 2009). Among self-reported need factors, the strongest predictors of self-reported oral health status were: ‘past oral problems’, ‘having a dental visit within the last year’, ‘reason for the dental visit’, and ‘self-reported importance of oral health’. Approximately two thirds of the study sample needed one or more dental treatments, if assumed that self-reported conditions could be a good representation of treatment needs. The most common reported oral conditions were tooth sensitivity, gingival bleeding, and tooth decay. Similar findings were reported in a longitudinal oral health needs assessment conducted by Marcus et al. (2005) in the United States where 40% of PLHIV had unmet dental treatment needs for the past 10 years. Others have reported that 50% of PLHIV had unmet dental treatment needs and no financial resources to seek dental care (Marx et al., 1997). Similarly, the most common untreated dental problems reported by Fox et al. (2012) were tooth decay, sensitivity in teeth and gums, bleeding gums and toothache. Although these untreated dental conditions are not exclusive to PLHIV, this population tends to exhibit higher Decayed Missing Filled Teeth (DMFT) scores – as much as 32 times higher than HIV-uninfected persons (Bretz et al., 2000; Phelan et al., 2004). However, findings reported here do not corroborate the severity of these clinical findings from the literature probably because there were no clinical examinations performed in the current study. Furthermore, participants who had visited a dental professional within the last year were more likely to report the need for one or more dental treatment, which contrasts the findings of others (Rajabuin et al., 2011). In the current study, where the majority of respondents reported dental emergency as the reason for 85 their last dental visit, it was not surprising that high levels of unmet dental treatment needs still persist. Such findings of reporting unmet dental treatments and seeking dental care only for emergency purposes are a cause of concern, particularly for this population. Oral opportunistic infections like ulcers and candidiasis and other untreated dental problems such as tooth decay can go undetected more frequently than any other health condition. As a consequence, this can have a significant impact on overall health and well-being of immunocompromised HIV-infected individuals. Therefore, there is a need to develop strategies to increase access to appropriate and acceptable care by reducing cost and other barriers so the unmet oral health needs in this vulnerable population can be adequately addressed (Rajabuin et al., 2011). In terms of the actual number of self-reported needs, participants from the current study highlighted they had up to 26 different treatment needs, which is worrisome given the potential associations between oral and general health. This study employed the A&N model to identify the most significant predictors associated with self-reported oral health status and unmet dental treatment needs among PLHIV. Multivariate modelling revealed that the best predictors of self-reported oral health and unmet dental treatment needs were: having living difficulties, not having a regular dentist, having dental anxiety, avoiding dental treatment due to cost, employment status, not visiting a dentist within the last year, and the importance given to oral health. Similar findings have been reported in various studies employing the A&N model among vulnerable pregnant women (Jessani et al., 2016) and the working poor (Ramraj et al., 2012). Therefore, it is concluded that the use of the A&N model of health service utilization was appropriate as a framework for this study. 86 5.6 Limitations As described in chapter 4, the survey link was sent out to more than 600 PLHIV in BC, and only 186 HIV-positive individuals fully responded to the questionnaire – a number much lower than expected. Moreover, the information collected was self-reported and therefore the subjective oral health needs were not cross-checked with a clinical assessment of dental treatment needs. Due to the low recruitment rate and consequent lack of statistical representation, the present findings cannot be generalized beyond the sample of PLHIV in BC who were studied. Lastly, the LHR required all the variables to be ‘hierarchically’ included in the subsequent models, not just the ones that were significant. But because of the number of missing responses in some questions, none of the three assumptions for LHR (variance, collinearity and CI) were met. As a result, I only included those variables with significate values obtained after adjusting the variance. 5.7 Conclusions Despite the above limitations, this is the first study to explore the self-reported oral health status and unmet dental treatment needs amongst the HIV-positive Canadian population using the Anderson and Newman model of health service utilization. Several predisposing, enabling, and need factors were associated with both outcome variables. More than one third of the participants rated the health of their mouths as fair or poor and reported having one or more dental treatment need. The majority of the respondents did not seek dental care within the last year, and of those who did, more than half did for emergency reasons only. Also, in addition to various psychosocial barriers, a significant number of respondents reported experiencing stigma and discrimination from oral care providers. Such self-reported experiences highlight the need to create safer dental homes for PLHIV. 87 Next chapter With the objectives and research questions addressed individually in Chapters 3, 4 and 5, Chapter 6 brings all the findings together to discuss them as a whole, and conclude my doctoral study. Although unusual, please note that Chapter 6 was prepared as a stand-alone manuscript. As such, it repeats information from the previous chapters. 88 Chapter 6: Discussion, Conclusions and Future Directions Summary: Objectives: To explore the unmet oral health care treatment needs of, and the availability of service to, People Living with Immunodeficiency Virus (PLHIV) in British Columbia (BC), Canada. Methods: An online environmental scan identified services available for PLHIV in BC. Participants were asked to respond anonymously to a 40-item questionnaire. Associations between the psychosocial factors and outcome variables were evaluated using simple and multiple logistic regression analyses. Results: A total of 104 HIV organizations were identified in BC and less than 3% of the organizations offered dental care. Most of the services identified were distributed within the geographical location of Vancouver Coastal Health which has the highest prevalence of PLHIV in BC. Amongst the 186 participants who responded to the survey, the majority were male (n = 118; 63%) and born in Canada (n = 116; 68%). In multiple logistic regression analysis, dental anxiety (OR = 0.1; 95% CI 0.0; 0.4), having a regular dentist (OR = 3.7; 95% CI 1.1; 12.6) and visiting a dental office in the last year (OR = 21.6; 95% CI 6.1; 76.5) were the strongest predictors for the unmet oral health care treatment needs and last dental visit. Conclusion: Services in general might be available where PLHIV live, but fall short in other areas; dental services are lacking across BC despite participants having high treatment needs. 89 This study was the first of its kind to conduct an environmental scan to identify the available services (Chapter 3), to explore patterns of dental service utilization (Chapter 4) and identify the unmet oral health needs of Canadians living with Human Immunodeficiency Virus (HIV) (Chapter 5). HIV continues to be a global and national public health concern, with provincial and territorial diagnosis rates varying across Canada. There were approximately 75,000 Canadians living with HIV in 2014 with approximately 12,000 HIV-infected individuals residing in British Columbia (BC; Government of Canada, 2015). In 2016, Saskatchewan had more than double the overall Canadian HIV incidence rate, and had the highest diagnosis rate of HIV at 15.1 per 100,000 population followed by Manitoba at 9.5 per 100,000 population, Quebec at 7.1 per 100,000 population, and Alberta at 6.6 per 100,000 population. In terms of the proportion of reported cases in 2016, Ontario accounted for the highest number (n = 881, 37.6%), followed by Quebec (n = 593, 25.3%) and Alberta (n = 282, 12.0%) (Public Health Agency of Canada, 2016). Yet, there was no published data on the oral health needs of Canadians living with HIV/AIDS, particularly from BC, thus providing the justification for this study. Further, three distinct objectives were identified for this study: 1. To map out different HIV-specific services available for PLHIV in BC. 2. To explore the associations among the time and reason of last dental visit utilizing the A&N model of health service utilization. 3. To explore the associations among self-reported oral health status and dental treatment needs utilizing the A&N model of health service utilization. 90 6.1 Objective 1 (Chapter 3): Environmental Scan – Availability of general and oral health services With the help of online search engines such as Google® and Yahoo!®, HIV organizations providing services exclusively for PLHIV in the province of BC were identified. Amongst 51 cities, 40 had one or more organizations that provided various health and wellness services to their HIV-positive clients. The majority of these organizations (59%) focused on preventive services such as condom dispensation and sexually transmitted infection education, while very few organizations provided any kind of support services (38%) such as housing, food or employment. A much smaller number of organizations (15%) provided medical and treatment services of any kind to PLHIV. The emphasis on services exclusively for PLHIV was justified because almost half of the respondents from this study reported experiences of stigma, discrimination and marginalization. These issues are well known to prevent or hinder care-seeking behaviour and it was assumed that HIV-exclusive services would likely be less stigmatizing and discriminatory (Patel et al., 2015). The Vancouver Coastal Health Authority (VCHA) was reported to have the highest incidence of PLHIV with 132 new cases per 100,000 people in 2014, while the Northern Health Authority (NHA) was reported to have the second highest incidence of HIV with 45 new cases per 100,000 people in 2014 (BCCDC, 2015). Furthermore, as per the BCCDC HIV-monitoring report in 2016, the highest prevalence of PLHIV was reported in the VCHA with 4,669 PLHIV, while the Interior Health Authority reported the least prevalence with 304 PLHIV. The results from this study revealed that most of the services are located within the geographical area of the VCHA, followed by the Fraser Health Authority region and then the Vancouver Island Health Authority, respectively. Such findings show a disproportionate distribution of the services 91 especially in areas outside large metropolitan hubs. Hence, most of the identified services were educational and/or supportive in nature. These services are essential to address unmet psychosocial needs such as self-stigma, mental health and socioeconomic issues (WHO Priority Population Document, 2015). However, there is a need for a broader strategy that invests in social services, improved environmental quality, and health behaviours so that the health of marginalized PLHIV is improved (WHO Priority Population Document, 2015; Kenneth et al., 2017). In terms of dental services in particular, this study identified 3% of the 104 services as being related to dental care and hygiene; only the Positive Living Society of British Columbia within the geographical location of VCH offers full dental services, and has some collaboration with UBC Dentistry and other community partners. Unfortunately, virtually all the other health authorities appeared to lack any organization offering basic oral care services to PLHIV (Figures 1-3, Chapter 3). As highlighted by the A&N model, factors such as long travelling distances, financial constraints and lack of resources can play significant roles in determining people’s access to care services (Andersen et al., 2005). This was further confirmed in research objectives two (Chapter 4) and three (Chapter 5) of this study. 6.2 Objective 2 (Chapter 4): Utilization of dental services by PLHIV Approximately 93% of the study’s participants were from Vancouver, with the remaining 7% of the sample being from other parts of BC such as Vancouver Island, Abbotsford and Chilliwack; participants from other areas with high rates of HIV infection were not reached. With a lack of dental services identified in the environmental scan, it did not come as a surprise that more than half of the participants had not visited a dental professional within the last year. Amongst those who did report a visit to a dental professional within the last year, more than half 92 of them sought dental care for emergency reasons, a finding similar to results reported from other population groups (Mago et al., 2018). The most significant predisposing factors associated with the two outcome variables (having a dental visit within the last year and reasons for that dental visit) were: age, male gender, number of years spent in Canada, having good general health, taking HIV medications, and not having a past medical condition due to HIV. Similar determinants of dental service utilization were reported in several other studies conducted on marginalized populations (Kenagy et al., 2003; Rajabuin et al., 2011). The most significant enabling factors of the last dental visit and reasons for a dental visit identified in this study sample were: having a higher income, having dental insurance, having a family doctor, having a regular dentist, not having dental anxiety, not avoiding treatment due to cost, and not having experienced discrimination by a dentist. Various other studies have also identified that having financial resources can play a significant role in providing access to dental care (Tomar et al., 2011; Rajabiun et al. 2011; Fox et al. 2012). Like other marginalized groups such as the homeless (Mago et al., 2018) and vulnerable pregnant women (Jessani et al., 2016), HIV-infected populations often lack financial resources to access dental care, which could help explain why PLHIV tend to exhibit higher unmet dental treatment needs than non-HIV infected individuals (Heslin et al. 2001). Additional barriers to care for PLHIV are stigma and discrimination due to their HIV status as reported by approximately 50% of the participants. This has been consistently reported by other studies such as Patel and colleagues (2015) where 60% of HIV-positive participants reported being ‘judged’ by their oral care providers due to their HIV status (Patel et al., 2015; Donnelly et al., 2016). This kind of behaviour by oral care providers can lead to mistrust and 93 significantly impact people’s desire to seek care (Donnelly et al., 2016). There is a need for providing dental services within safe dental homes where staff and clinicians are sensitive and aware of the unique challenges faced by PLHIV (Rajabuin et al. 2011; Donnelly et al., 2016). Community outreach programs within dental schools and community colleges can play a significant role in achieving this task (Jones et al. 2012). As identified in the environmental scan, the partnership between UBC Dentistry and Positive Living Society of British Columbia serves the purpose of creating a safe and non-judgmental dental setting for PLHIV. Moreover, fourth-year UBC dental students serve at various community sites such as the Vancouver Native Health Society, Positive Living Society of BC and Portland Dental Clinic in the Downtown Eastside of Vancouver (JCDA, 2011), which includes a significant number of PLHIV. Such consistent efforts are needed to train the next generation of oral care clinicians and to ensure the HIV community is not subjected to stigma and discrimination by their oral care providers. Lastly, the need-related predictors that were most significant of the last dental visit and reasons for a dental visit in this study were: self-reported dental treatment need, dental problems, oral health status, and perception of oral health as important. Unlike other studies (Jessani et al., 2016), participants in this study that rated the health of their mouth as fair or poor were more likely to visit their dental professional within the last year compared to the respondents who rated the health of their mouth as excellent, very good or good. This could be due to the fact that more than half of this study population visited a dental professional for an emergency reason only, which may also be linked to most of the study population reporting having one or more dental treatment needs. And as identified in the environmental scan, there were only three organizations dedicated to preventive dental care services for this population group. This is of concern as most dental diseases can be prevented if diagnosed at an early stage. Without having 94 access to preventive dental services, marginalized populations such as PLHIV, are more likely to visit a dental clinic for emergency reasons as identified in this study. As a consequence, this creates more financial burden and leads to unmet dental treatment needs as reported by the respondents in this study. 6.3 Objective 3 (Chapter 5): Self-reported oral health needs by PLHIV The two predisposing factors that were significantly associated with self-reported oral health status were general health and time of HIV diagnosis. In Richmond and colleagues’ study (2017), respondents who rated their general health as excellent or good were more likely to rate their oral health in a similar way. This reinforces the relationship between good oral health and the general well-being of an individual, and it becomes more significant for PLHIV. It is estimated that between 30% to 80% of PLHIV can potentially develop one or more oral opportunistic infections at least once during the course of their HIV infection (Cherry-Peppers et al., 2003); yet more than half of the participants in this study had not visited a dental professional within the last year and most sought dental care for emergency reasons only. Furthermore, participants who were diagnosed with HIV infections more than five years prior to this study were more likely to rate the health of their mouth as excellent/very good or good. This could be an outcome of coping and adapting with the distress caused by initial diagnosis. According to a study by Tsevat and colleagues (2009), HIV-infected individuals tend to take good care of their general well-being once they cope with the initial stress of their HIV diagnosis. For the second study outcome variable, self-reported unmet dental treatment needs, four significant predisposing predictors were found: ‘experienced discrimination by dental professionals’, ‘have good general health’, and ‘have current and past medical conditions due to 95 HIV’. Stigma and discrimination were also strong predictors for self-reported treatment needs among PLHIV in BC. Several enabling factors such as ‘unemployment’, ‘having living difficulties’, ‘having a regular dentist’, ‘experiencing dental anxiety’ and ‘avoiding dental treatment due to cost’ were associated with self-reported dental treatment needs. Like other marginalized populations (Mago et al., 2018, Jessani et al., 2016), PLHIV may lack the financial resources to access dental care, which could be a reason for their higher unmet dental treatment needs. Furthermore, respondents from this study were subjected to difficult living conditions such as lack of secure housing, adequate clothing, and food, which is consistent with the lack of support services for this population. Rajabuin and colleagues (2011) suggested having access to publicly funded community clinics to provide at least preventive and basic dental care for PLHIV. Finally, the strongest predictors of self-reported oral health status in this study were: ‘past oral problems’, ‘having a dental visit within the last year’, ‘reason for the dental visit’ and ‘self-reported importance of oral health’. The most commonly reported oral conditions were tooth sensitivity, gingival bleeding, and decay, as also observed in other studies of non-Canadian participants (Fox et al., 2012; Jeanty, 2012). A study conducted by Marcus and colleagues (2005) reported that more than one third of their study population had one or more unmet dental treatment needs including tooth decay. These findings align well with the results of this study where more than two-thirds of this study’s sample reported two or more untreated dental conditions, and yet according to the environmental scan shown in Chapter 3, these same people would probably face difficulties in finding services because only 3% of identified services available to them included dental care. Therefore, there is a need to develop publicly funded programs that would increase access to dental care (Rajabuin et al., 2011). 96 6.4 General Conclusions In British Columbia, HIV-related exclusive services are not equally distributed according to the rates of HIV infection in the province. More than half of the 104 services identified in BC were mostly educational in nature, underscoring the need for preventive and comprehensive dental services exclusively for PLHIV. More than one third of the participants in this study rated the health of their mouth as fair or poor and reported having one or more dental treatment need. The majority did not seek dental care within the last year, and of the participants who did, more than half reported it was for emergency reasons. A significant number of respondents reported experiencing stigma and discrimination from oral care providers, highlighting the persistent oral healthy disparity and need to create safer dental homes for PLHIV. 6.5 Challenges and Limitations The most challenging task encountered while executing this study was participant recruitment for data collection. Data collection included completing a 40-item, self-reported questionnaire that was adapted from the Canadian Health Measure Survey (CHMS, 2011). Several organizations were approached via email, phone or in person with a request to collaborate with this research. Unfortunately, only two organizations were interested in asking their members to fill out the research questionnaire and only 186 responses met the inclusion criteria, meaning this study has selection bias. Because only two HIV organizations were selected for data collection, there is a possibility that PLHIV who are not affiliated with these organizations, and those who are affiliated but do not have access to the internet and did not sign up for the monthly newsletters, were missed out from our data collection. This relative lack of engagement could be related to several factors: as suggested by Pagano-Therrien in 2013, PLHIV (particularly youth and adolescents) may experience ‘research fatigue’ for being 97 subjected to various research inquiries as a group, which could substantially impact further research enrolment as participants. Furthermore, due to competing priorities such as the complex medical management of HIV-infection, oral health needs assessment might not be a topic of interest for PLHIV (Benjamin, 2012). Lack of financial resources and logistical arrangements within HIV organizations could have also impacted people’s ability or willingness to participate in this research study as there was no financial incentive or compensation to complete the survey – had that been possible, it might have served as a motivating factor to increase enrolment. There was also no mechanism in place to assure that participants responded to the questionnaire only once. Due to these challenges, the minimum desired sample size (n = 385) was not attained. This study may not be a representation of the overall community of PLHIV residing in BC. Furthermore, the postal codes provided by the participants revealed that a majority of them were clustered in the Vancouver Lower Mainland area and there was not sufficient data gathered regarding PLHIV from the other four health authorities across the province. This was also a self-reported study, and due to the associated logistical challenges and lack of funding, no clinical examinations were performed. However, the results from this self-reported data still provide a valid surrogate measure of unmet oral health needs and patterns of dental service utilization of PLHIV in BC. The fact that 40 out of 51 cities offered some sort of service might come as a surprise, but has to be understood with caution as the effective service-to-population ratio is unknown when comes to HIV care and it was not possible to fully estimate the number of services required to care for PLHIV. Despite these limitations, this study is the first of its kind to attempt to provide a snapshot of the environment of oral health services and unmet oral health needs of PLHIV in BC. 98 6.6 Implications and future directions The findings from this study suggest the need for conducting more exploratory inquires that could include in-depth interviews and clinical examinations to further identify the unmet dental treatment needs of PLHIV. Similar studies should also target a larger sample of participants to be representative of BC and also to be replicated in other provinces including Saskatchewan, Manitoba and Quebec that have a significant number of PLHIV (Public Health Agency of Canada, 2014). Nonetheless, results from this study can be used to: • Inform policy makers and HIV organizations about the lack of services for PLHIV in the province of British Columbia. • Better tailor services that are geographically aligned with HIV cases given that regions like Northern BC, with the second highest HIV incidence in the province, has the least amount of basic treatment and support services for this population. • Advocate for the need for community outreach and capacity building in underserved areas across BC. • Foster a discussion around alternative ways to provide health and oral health care for PLHIV. 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The Transtheoretical Model (stages of change) Late 1970s Prochaska and DiClemente Originally this model evolved through the studies that examined the experiences on smoking cessation behaviours. According to this model, an individual move through six stages of change: pre-contemplation, contemplation, preparation or determination, action, maintenance, termination. This model provides strategies for population-based interventions especially for the individuals at different stages of decision-making. However, this model generally ignores the social context such as demographics and SES that might impact one’s ability of decision-making. 2. The Health Belief Model Early 1950s Rosenstock, Hochbaum, Kegeles and Leventhal This model was initially developed to understand the reasons why people fail to adopt disease prevention services. The two main components of this model include: 1) the desire to avoid illness 2) the specific health treatment 107 will prevent or cure a particular disease/illness. This model emphasizes the fact that ultimately health service utilization depends on ones perceptions of benefit of, and barriers to, an intervention. This model, however, doesn’t take into consideration the factors that may impact one’s belief such as culture. Also, this model is more descriptive then exploratory in nature and does not suggest any strategy for changing health related actions. 3. The Theory of Planned Behaviour 1980s Icek Ajzen Also known as the Theory of Reasoned Action, this model was developed to predict one’s intention to engage in a behaviour specific to time and place. This model has been used to explain a wide range of problems such as smoking, drinking, substance abuse, etc. The six main constructs of this model that explains an individual’s intention to engage in behaviour include: attitudes, behavioural intention, subjective norms, social norms, perceived power and perceived behavioural control. Despite of its utility in public health, this model has failed to address the environmental and 108 economic reasons that might affect and individual reason to plan a behaviour. 4. Diffusion of Innovation Theory. 1962 E.M. Rogers This model provides a theoretical reasoning on how an idea or an innovation is accepted and diffused in population over time through a social system. It explains a process on how an idea or a behaviour is adopted by some and replied on by others in a population. Hence it focuses on five adopter categories: innovators, early adopters, early majority, late majority and laggards. The five main factors that influence these ‘adoptors’ are 1) relative advantage, 2) compatibility, 3) complexity, 4) trainability and 5) observability. This model, however, has a very limited utility in public health as it was not explicitly developed to explore health-related behaviour and outcomes. 5. The Social Cognitive Theory 1960s Albert Bandura This theory focuses on the fact that learning occurs in a social context. It takes in an account an individual’s past experience that may influence reinforcements, expectations and expectancies, that will gradually 109 determine if a person is likely to engage in a specific behaviour or reasons why a person engages in that specific behaviour. The six main constructs of this model are: 1) Reciprocal Determinism 2) Behavioural capability 3) Observational learning 4) Reinforcements 5) Expectations 6) Self-Efficacy. On the down side, this theory makes an assumption that changing an environment can subsequently lead to a behavioural change. It ignores the motivational factors such as emotions that could impact one’s decision to engage in a behaviour. 6. Social Norm Theory 1986 Perkins and Berkowitz This theory aims to explore the social and interpersonal factors (peers) in order to change a behaviour. It was first utilized to address student alcohol use patterns where it emphasized understanding environmental and interpersonal factors instead of focusing on an individual to change behaviour. This theory has proven to be very effective in behavioural modification and has been used in various public health and media 110 campaigns to reach out to the wider population. 111 Appendix B - HIV-specific preventive and diagnostic services in British Columbia City Organization Testing Services HIV Education Partner Notification Preventive Resources Abbotsford Positive Living Fraser Valley Society - Abbotsford Office   Abbotsford STI/HIV Clinic - Abbotsford Health Unit, Fraser Health     Abbotsford MCC: Abbotsford Area HIV and AIDS Support Group  Armstrong NONE Burnaby Burnaby Youth Clinic   Burnaby Opt Clinic - Metrotown   Campbell River AIDS Vancouver Island   Castlegar Opt Clinic - Castlegar   Chilliwack STI/HIV Clinic - Chilliwack Health Unit, Fraser Health     Chilliwack Pacific Community Resources - HIV and Hep C Prevention Program    Chilliwack Opt Clinic - Metrotown   Chilliwack Positive Living Fraser Valley Society - Abbotsford Office (MOBILE)   Colwood NONE Coquitlam NONE Courtenay AIDS Vancouver Island   Cranbrook East Kootenay ANKORS   Dawson Creek Dawson Creek Health Unit   Dawson Creek PLN at the Nawican Friendship Centre   Duncan VIHA - HIV Services   Duncan Duncan Margaret Moss Health Clinic    Duncan Cowichan Midwifery Group    Enderby NONE Fernie Opt Clinic - Fernie   112 Fernie Fernie Health Unit  Fort St. James Fort St. James Health Unit   Fort St. John Fort St. John Health Unit   Grand Forks Grand Forks Health Centre   Grand Forks Opt Grand Forks   Grand Forks Boundary Women’s Resources Centre  Greenwood NONE Kamloops AIDS Society of Kamloops    Kamloops Kamloops Street Nurse Outreach Clinic   Kelowna Outreach Urban Health Centre    Kelowna Living Positive Resource Centre    Kelowna STI/HIV Clinic - Kelowna Health Unit   Kelowna Kelowna Central Health Centre    Kelowna Okanagan Aboriginal AIDS Society   Kimberley NONE Langford NONE Langley Langley Youth Wellness Centre    Langley Opt Clinic - Langley   Langley Positive Living Fraser Valley Society - Abbotsford Office (MOBILE)   Maple Ridge Options for Sexual Health   Merrit AIDS Society of Kamloops - Merrit’s Office    Nanaimo AIDS Vancouver Island   Nanaimo Nanaimo Youth Clinic    Nanaimo Adult STI Clinic   Nelson West Kootenay ANKORS   New Westminster STI/HIV Clinic - New Westminster Health Unit, Fraser Health     New Westminster New Westminster Youth Clinic    North Vancouver Healing Our Spirit: Aboriginal    113 HIV/AIDS Services North Vancouver Red Road HIV/AIDS Network    North Vancouver John Braithwaite Youth Health Clinic     North Vancouver Parkgate Youth Health Clinic     Parksville Mid-Island AIDS Society  Penticton NONE Pitt Meadows NONE Port Alberni Port Alberni IHN - HIV Educational Sessions   Port Alberni Port Alberni Youth Health Centre   Port Alberni Port Alberni Health Unit    Port Coquitlam Opt Clinic - Port Coquitlam   Port Moody Port Moody Youth Clinic    Port Moody Tri-cities Youth Clinic    Powell River Powell River Community Centre    Powell River Powell River Youth Clinic    Prince George STI/HIV Clinic - Prince George Health Unit    Prince George Prince George New Hope Society   Prince George Positive Living North   Prince Rupert Opt Clinic - Prince Rupert   Prince Rupert Prince Rupert Community Centre    Quesnel Quesnel Tillicum Society   Quesnel Quesnel Health Unit   Revelstoke NONE Richmond Heart of Richmond AIDS Society   Richmond Gilwest Clinic    Richmond Cambie Connections Youth Clinic    Richmond Public Health Youth Clinic    Rossland NONE Salmon Arm NONE 114 Surrey Maxxine Wright Community Health Centre    Surrey Positive Health Services    Surrey STI/HIV Clinic - North Surrey Health Unit, Fraser Health     Surrey Positive Living Fraser Valley Society - Abbotsford Office (MOBILE)   Surrey Surrey HIV/AIDS Centre Society   Surrey Positive Haven   Surrey Surrey Memorial Youth Clinic    Terrace Terrace Health Unit     Trail NONE Vancouver Positive Women’s Network   Vancouver Oak Tree Clinic   Vancouver St. Paul’s Hospital - Immunodeficiency Clinic   Vancouver Positive Living of BC Society   Vancouver Youth Co  Vancouver Three Bridges Community Centre   Vancouver Maximally Assisted Therapy Program - Downtown Community Health Centre Vancouver Health Initiatives for Men (HIM)    Vancouver AIDS Vancouver   Vancouver Positive Outlook Program - Native Health Society   Vancouver Friends for Life Society  Vancouver Doctor Peter Centre   Vancouver Purpose Society   Vancouver A Loving Spoonful  Vancouver Healing Our Spirit: Aboriginal HIV/AIDS Services (North Vancouver Based)    115 Vancouver Vancouver - Provincial STI Clinic    Vernon Cammy LaFleur Street Outreach Clinic    Vernon Vernon Downtown Primary Care Centre   Victoria AIDS Vancouver Island   Victoria Island Sexual Health Society    Victoria Victoria AIDS Resource and Community Service Society   Victoria Living Positive Victoria   Victoria Victorian AIDS Council    Victoria Positive Women’s Network   White Rock Opt Clinic - White Rock   White Rock Positive Living Fraser Valley Society - Abbotsford Office (MOBILE)   Williams Lake Williams Lake Health Centre    Williams Lake Williams Lake STI Clinic    116 Appendix C - HIV-specific treatment services in British Columbia, Canada City Organization HIV-Specific Medical Care HIV- Specific Dental Care ARV Information Abbotsford Positive Living Fraser Valley Society - Abbotsford Office  Abbotsford STI/HIV Clinic - Abbotsford Health Unit, Fraser Health Abbotsford MCC: Abbotsford Area HIV and AIDS Support Group  Armstrong NONE Burnaby Burnaby Youth Clinic Burnaby Opt Clinic - Metrotown  Campbell River AIDS Vancouver Island   Castlegar Opt Clinic - Castlegar  Chilliwack STI/HIV Clinic - Chilliwack Health Unit, Fraser Health Chilliwack Pacific Community Resources - HIV and Hep C Prevention Program Chilliwack Opt Clinic - Metrotown  Chilliwack Positive Living Fraser Valley Society - Abbotsford Office (MOBILE)  Colwood NONE Coquitlam NONE Courtenay AIDS Vancouver Island   Cranbrook East Kootenay ANKORS  117 Dawson Creek Dawson Creek Health Unit Dawson Creek PLN at the Nawican Friendship Centre Duncan VIHA - HIV Services   Duncan Duncan Margaret Moss Health Clinic Duncan Cowichan Midwifery Group  Enderby NONE Fernie Opt Clinic - Fernie  Fernie Fernie Health Unit Fort St. James Fort St. James Health Unit  Fort St. John Fort St. John Health Unit Grand Forks Grand Forks Health Centre  Grand Forks Opt Grand Forks  Grand Forks Boundary Women’s Resources Centre Greenwood NONE Kamloops AIDS Society of Kamloops   Kamloops Kamloops Street Nurse Outreach Clinic  Kelowna Outreach Urban Health Centre  Kelowna Living Positive Resource Centre   Kelowna STI/HIV Clinic - Kelowna Health Unit Kelowna Kelowna Central Health Centre  Kelowna Okanagan Aboriginal AIDS Society 118 Kimberley NONE Langford NONE Langley Langley Youth Wellness Centre  Langley Opt Clinic - Langley  Langley Positive Living Fraser Valley Society - Abbotsford Office (MOBILE)  Maple Ridge Options for Sexual Health Merrit AIDS Society of Kamloops - Merrit’s Office   Nanaimo AIDS Vancouver Island   Nanaimo Nanaimo Youth Clinic  Nanaimo Adult STI Clinic  Nelson West Kootenay ANKORS  New Westminster STI/HIV Clinic - New Westminster Health Unit, Fraser Health New Westminster New Westminster Youth Clinic  North Vancouver Healing Our Spirit: Aboriginal HIV/AIDS Services   North Vancouver Red Road HIV/AIDS Network   North Vancouver John Braithwaite Youth Health Clinic  North Vancouver Parkgate Youth Health Clinic  Parksville Mid-Island AIDS Society  Penticton NONE Pitt Meadows NONE 119 Port Alberni Port Alberni IHN - HIV Educational Sessions Port Alberni Port Alberni Youth Health Centre Port Alberni Port Alberni Health Unit Port Coquitlam Opt Clinic - Port Coquitlam  Port Moody Port Moody Youth Clinic Port Moody Tri-cities Youth Clinic  Powell River Powell River Community Centre Powell River Powell River Youth Clinic  Prince George STI/HIV Clinic - Prince George Health Unit Prince George Prince George New Hope Society Prince George Positive Living North Prince Rupert Opt Clinic - Prince Rupert  Prince Rupert Prince Rupert Community Centre Quesnel Quesnel Tillicum Society Quesnel Quesnel Health Unit Revelstoke NONE Richmond Heart of Richmond AIDS Society  Richmond Gilwest Clinic Richmond Cambie Connections Youth Clinic Richmond Public Health Youth Clinic Rossland NONE 120 Salmon Arm NONE Surrey Maxxine Wright Community Health Centre Surrey Positive Health Services   Surrey STI/HIV Clinic - North Surrey Health Unit, Fraser Health Surrey Positive Living Fraser Valley Society - Abbotsford Office (MOBILE)  Surrey Surrey HIV/AIDS Centre Society  Surrey Positive Haven  Surrey Surrey Memorial Youth Clinic  Terrace Terrace Health Unit Trail NONE Vancouver Positive Women’s Network  Vancouver Oak Tree Clinic    Vancouver St. Paul’s Hospital - Immunodeficiency Clinic   Vancouver Positive Living of BC Society   Vancouver Youth Co  Vancouver Three Bridges Community Centre   Vancouver Maximally Assisted Therapy Program - Downtown Community Health Centre   Vancouver Health Initiatives for Men (HIM)   Vancouver AIDS Vancouver   121 Vancouver Positive Outlook Program - Native Health Society    Vancouver Friends for Life Society Vancouver Doctor Peter Centre   Vancouver Purpose Society  Vancouver A Loving Spoonful Vancouver Healing Our Spirit: Aboriginal HIV/AIDS Services (North Vancouver Based)   Vancouver Vancouver - Provincial STI Clinic  Vernon Cammy LaFleur Street Outreach Clinic  Vernon Vernon Downtown Primary Care Centre  Victoria AIDS Vancouver Island   Victoria Island Sexual Health Society  Victoria Victoria AIDS Resource and Community Service Society  Victoria Living Positive Victoria  Victoria Victorian AIDS Council   Victoria Positive Women’s Network  White Rock Opt Clinic - White Rock  White Rock Positive Living Fraser Valley Society - Abbotsford Office (MOBILE)  Williams Lake Williams Lake TRU Health Centre  122 Williams Lake Williams Lake STI Clinic  123 Appendix D - HIV-specific support services in British Columbia City Organization Referral for services Peer Support Counseling and Mental Health Drop in Activities Financial Assistance Access to Food Bank Housing Assistance Childcare Transportation Abbotsford Positive Living Fraser Valley Society - Abbotsford Office        Abbotsford STI/HIV Clinic - Abbotsford Health Unit, Fraser Health  Abbotsford MCC: Abbotsford Area HIV and AIDS Support Group    Armstrong NONE Burnaby Burnaby Youth Clinic  Burnaby Opt Clinic - Metro town   Campbell River AIDS Vancouver Island     Castlegar Opt Clinic - Castlegar   Chilliwack STI/HIV Clinic - Chilliwack Health Unit, Fraser Health  Chilliwack Pacific Community Resources - HIV and Hep C Prevention Program  Chilliwack Opt Clinic - Metro town   Chilliwack Positive Living Fraser Valley Society - Abbotsford Office (MOBILE)        124 Colwood NONE Coquitlam NONE Courtenay AIDS Vancouver Island     Cranbrook East Kootenay ANKORS   Dawson Creek Dawson Creek Health Unit  Dawson Creek PLN at the Nawican Friendship Centre       Duncan VIHA - HIV Services  Duncan Duncan Margaret Moss Health Clinic  Duncan Cowichan Midwifery Group  Enderby NONE Fernie Opt Clinic - Fernie   Fernie Fernie Health Unit  Fort St. James Fort St. James Health Unit  Fort St. John Fort St. John Health Unit Grand Forks Grand Forks Health Centre   Grand Forks Opt Grand Forks   Grand Forks Boundary Women’s Resources Centre   Greenwood NONE Kamloops AIDS Society of Kamloops      Kamloops Kamloops Street Nurse Outreach Clinic   Kelowna Outreach Urban Health Centre   125 Kelowna Living Positive Resource Centre     Kelowna STI/HIV Clinic - Kelowna Health Unit  Kelowna Kelowna Central Health Centre   Kelowna Okanagan Aboriginal AIDS Society  Kimberley NONE Langford NONE Langley Langley Youth Wellness Centre   Langley Opt Clinic - Langley   Langley Positive Living Fraser Valley Society - Abbotsford Office (MOBILE)    Maple Ridge Options for Sexual Health  Merrit AIDS Society of Kamloops - Merrit’s Office      Nanaimo AIDS Vancouver Island     Nanaimo Nanaimo Youth Clinic   Nanaimo Adult STI Clinic Nelson West Kootenay ANKORS   New Westminster STI/HIV Clinic - New Westminster Health Unit, Fraser Health  New Westminster New Westminster Youth Clinic   126 North Vancouver Healing Our Spirit: Aboriginal HIV/AIDS Services     North Vancouver Red Road HIV/AIDS Network North Vancouver John Braithwaite Youth Health Clinic  North Vancouver Parkgate Youth Health Clinic  Parksville Mid-Island AIDS Society  Penticton NONE Pitt Meadows NONE Port Alberni Port Alberni IHN - HIV Educational Sessions  Port Alberni Port Alberni Youth Health Centre  Port Alberni Port Alberni Health Unit Port Coquitlam Opt Clinic - Port Coquitlam   Port Moody Port Moody Youth Clinic  Port Moody Tri-cities Youth Clinic  Powell River Powell River Community Centre  Powell River Powell River Youth Clinic   Prince George STI/HIV Clinic - Prince George Health Unit Prince George Prince George New Hope Society Prince George Positive Living North       127 Prince Rupert Opt Clinic - Prince Rupert   Prince Rupert Prince Rupert Community Centre   Quesnel Quesnel Tillicum Society  Quesnel Quesnel Health Unit   Revelstoke NONE Richmond Heart of Richmond AIDS Society         Richmond Gilwest Clinic  Richmond Cambie Connections Youth Clinic Richmond Public Health Youth Clinic Rossland NONE Salmon Arm NONE Surrey Maxxine Wright Community Health Centre   Surrey Positive Health Services   Surrey STI/HIV Clinic - North Surrey Health Unit, Fraser Health  Surrey Positive Living Fraser Valley Society - Abbotsford Office (MOBILE)       Surrey Surrey HIV/AIDS Centre Society     Surrey Positive Haven  Surrey Surrey Memorial Youth Clinic  Terrace Terrace Health Unit  Trail NONE 128 Vancouver Positive Women’s Network      Vancouver Oak Tree Clinic        Vancouver St. Paul’s Hospital - Immunodeficiency Clinic      Vancouver Positive Living of BC Society       Vancouver Youth Co    Vancouver Three Bridges Community Centre     Vancouver Maximally Assisted Therapy Program - Downtown Community Health Centre      Vancouver Health Initiatives for Men (HIM)   Vancouver AIDS Vancouver      Vancouver Positive Outlook Program - Native Health Society        Vancouver Friends for Life Society     Vancouver Doctor Peter Centre     Vancouver Purpose Society     Vancouver A Loving Spoonful North Vancouver Healing Our Spirit: Aboriginal HIV/AIDS Services     Vancouver Vancouver - Provincial STI Clinic  Vernon Cammy LaFleur Street Outreach Clinic Vernon Vernon Downtown Primary Care Centre 129 Victoria AIDS Vancouver Island  Victoria Island Sexual Health Society  Victoria Victoria AIDS Resource and Community Service Society      Victoria Living Positive Victoria    Victoria Victorian AIDS Council       Victoria Positive Women’s Network      White Rock Opt Clinic - White Rock   White Rock Positive Living Fraser Valley Society - Abbotsford        Williams Lake Williams Lake TRU Health Centre  Williams Lake Williams Lake STI Clinic   130 Appendix E - Participant recruitment advertisement 131 Appendix F – Research information and informed consent 132 Appendix G - Survey questionnaire 133 134 135 136 137 138 139 140 Appendix H - Operationalization of variables according to A&N model of health service utilization OUTCOMES Operationalization of original variables N (%) Time of the last dental visit Never 9 (5.6%), five to six years 23(14.3%), four to five years 14(8.7%); three to four years 26 (16.1%), two to three years 20 (12.4%), one to two years 14(8.7%) and less than one year 55 (34.2%). Reason for the last dental visit More than once a year for check-ups or treatment 41(25.6%), about once a year for check-ups or treatment 14(8.8%), less than once a year for check-ups or treatment 19(11.9%), for emergency care only 70(43.8%) and never 19(10.0%) PREDICTORS Predisposing factors Age Age in years, mean ± sd: 46.9 ± 11.8; min 19 years, max 83 years. Gender Males 10 (63.9%), females 55(30.9%) and others 28(3.0%) Years in Canada Born in Canada 116(68.2%), less than five years 13(7.6%), five to 10 years 12(7.1%) and more than 10 years 29 (17.1%) Education level Less than high school 19(12.2%), high school and/or trade certificate 58(37.2%) and college and above 79(50.6%) Ethnicity White 84(54.5), South Asian 7(4.5%), Chinese 5(3.2%), Pilipino 3(1.9%), Arab 1(0.6%), Southeast Asian 2(1.3%), West Asian 2(1.3%), Aboriginal 28(18.2%), Latin American 13(8.4%), African 5(3.2%) and Black 4(2.6%) Refugee status No 47(88.6%) and yes 19(11.4%) Self-reported general health status Excellent 16(9.9%), very good 44(27.2%), good 55(34.0%), fair 42(25.9) and poor 5(3.1%) Self-reported mental health No 93(57.4%) and yes 69(42.6%) HIV diagnosis Less than one year ago 6(3.8%), one to five years ago 14(9.0%), five to ten years ago 34(21.8%), more than 10 years ago 50(32.1%), more than 20 years ago 52(33.3%) HIV medications No 8(5.2%) and yes 145(94.8%) HIV-related medical condition (current) No 108(68.8%) and yes 49(31.2%) HIV-related medical condition (past) No 65(41.9%) and yes 90(58.1%) Enabling Factors Employment status Unemployed 73 (41.1% and employed 88 (49.4%) Income Less than $500 32(20.1%), $5000 to less than 10,000 25(15.7%), $10,000 to less than 15,000 38(23.9%), 15000 to less than 20,000 22(13.8%), 20,000 to less than 25000 12(7.5%), 25000 to less than 30,000 12(7.5%), 30,000 and more 18(11.3%) Avoiding dental treatments due to cost No 80(49.1%) and yes 83(50.9%) 141 Total number of living difficulties Min=0, Max=5 Mean 2.8 ±1.5 (based on five questions) Difficulties: food No 71(40.8%) and yes 103(59.2%) Difficulties: transportation No 106(60.9%) and yes 68(38.2%) Difficulties: housing No 66(37.9%) and yes 108(62.1%) Sense of community belonging Definitely true 57(35.2%), probably true 59(36.4%), definitely false 30(18.5%), probably false 16(9.9%) Having a support for solving problems Definitely true 56(33.9%); probably true 62(37.6%), definitely false 25(15.2%), probably false 22(13.3%) Trusting someone to talk about HIV Definitely true 59(35.5%), probably true 34(20.5%), definitely false 51(28.7%), probably false 22(13.3%) Taking you to a doctor Definitely true 43(25.9%), probably true 38(22.9%), definitely false 41(24.7%) and probably false 44(26.5%) Having a family doctor No 14(8.8), yes 145(91.2) Having a regular dentist No 125(73.1%) and yes 46(26.9%) Discrimination by a dental professional No 88(54.3%) and yes 74(45.7%) Having dental anxiety Not anxious 53(34.6%), slightly anxious 34(22.2%), fairly anxious 32(20.9%), very anxious 22(14.4%) and extremely anxious 12(7.8%) Need Factors Number of self-reported oral conditions (current) Toothache, sensitivity, pain in TMJ, bleeding gums, dry mouth, bad breath, white patch on tongue, decay, ulcers, loosening of teeth, swelling around neck, mouth pain, all of the above, none of the above, other Min=0; Max=14 Mean 2.6±2.5 Number of self-reported oral conditions (past) Toothache, sensitivity, pain in TMJ, bleeding gums, dry mouth, bad breath, white patch on tongue, decay, ulcers, loosening of teeth, swelling around neck, mouth pain, all of the above, none of the above, other Min=0; Max=13 Mean 2.2±2.7 Number of self-reported treatment needs Cleaning, filling(s), pain in jaws, unhappy with appearance of my teeth, root canal treatment, braces, partial dentures, complete dentures, implant, bridge or crown, ulcers, dry mouth, teeth becoming loose, tooth sensitivity, bleeding gums, tooth ache, none of the above, I don’t know, other min=0; max=15 mean ± sd 2.6±3.0 Self-reported oral health Poor 9(5.6%), fair 23(14.3%), good 42(25.9%), very good 21(13.0%); excellent 14 (8.6%) Self-reported importance of oral health Not at all important 5(3.0%); not important 15(9.1%), I don’t know 6(3.6%), somewhat important 41(24.8) and very important 98(59.4%)