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Factors influencing quality of life in patients with active tuberculosis Marra, Carlo A; Marra, Fawziah; Cox, Victoria C; Palepu, Anita; Fitzgerald, J M Oct 20, 2004

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ralHealth and Quality of Life OutcomesssBioMed CentOpen AcceResearchFactors influencing quality of life in patients with active tuberculosisCarlo A Marra*1,2, Fawziah Marra1,3, Victoria C Cox1, Anita Palepu4,5 and J Mark Fitzgerald2,6Address: 1Faculty of Pharmaceutical Sciences, University of British Columbia, Vancouver, BC, Canada, 2Centre for Clinical Epidemiology and Evaluation, Vancouver Coastal HealthResearch Institute, Vancouver, BC, Canada, 3Division of Pharmacy and Vaccines, British Columbia Centre for Disease Control, Vancouver, BC, Canada, 4Division of Internal Medicine, Faculty of Medicine, University of BritishColumbia, Vancouver, BC, Canada, 5Centre for Health Outcome and Evaluation Sciences, St. Paul's Hospital, Vancouver, BC, Canada and 6Division of Respiratory Medicine, Faculty of Medicine, University of British Columbia, Vancouver, BC, CanadaEmail: Carlo A Marra* - cmarra@interchange.ubc.ca; Fawziah Marra - fawziah.marra@bccdc.ca; Victoria C Cox - vccox@telus.net; Anita Palepu - anita@hivnet.ubc.ca; J Mark Fitzgerald - markf@interchange.ubc.ca* Corresponding author    AbstractBackground: With effective treatment strategies, the focus of tuberculosis (TB) management has shiftedfrom the prevention of mortality to the avoidance of morbidity. As such, there should be an increasedfocus on quality of life (QoL) experienced by individuals being treated for TB. The objective of our studywas to identify areas of QoL that are affected by active TB using focus groups and individual interviews.Methods: English, Cantonese, and Punjabi-speaking subjects with active TB who were receiving treatmentwere eligible for recruitment into the study. Gender-based focus group sessions were conducted for theinner city participants but individual interviews were conducted for those who came to the main TB clinicor were hospitalized. Facilitators used open-ended questions and participants were asked to discuss theirexperiences of being diagnosed with tuberculosis, what impact it had on their lives, issues aroundadherence to anti-TB medications and information pertaining to their experience with side effects to thesemedications. All data were audio-recorded, transcribed verbatim, and analyzed using constant comparativeanalysis.Results: 39 patients with active TB participated. The mean age was 46.2 years (SD 18.4) and 62% weremale. Most were Canadian-born being either Caucasian or Aboriginal. Four themes emerged from thefocus groups and interviews. The first describes issues related to the diagnosis of tuberculosis and sub-themes were identified as 'symptoms', 'health care provision', and 'emotional impact'. The second themediscusses TB medication factors and the sub-themes identified were 'adverse effects', 'ease ofadministration', and 'adherence'. The third theme describes social support and functioning issues for theindividuals with TB. The fourth theme describes health behavior issues for the individuals with TB and theidentified sub-themes were "behavior modification" and "TB knowledge."Conclusion: Despite the ability to cure TB, there remains a significant impact on QOL. Since muchattention is spent on preventative or curative mechanisms, the impact of this condition on QoL is oftennot considered. Attention to the issues experienced by patients being treated for TB may optimizeadherence and treatment success.Published: 20 October 2004Health and Quality of Life Outcomes 2004, 2:58 doi:10.1186/1477-7525-2-58Received: 03 September 2004Accepted: 20 October 2004This article is available from: http://www.hqlo.com/content/2/1/58© 2004 Marra et al; licensee BioMed Central Ltd. This is an open-access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.Page 1 of 10(page number not for citation purposes)Health and Quality of Life Outcomes 2004, 2:58 http://www.hqlo.com/content/2/1/58IntroductionGlobally, tuberculosis (TB) is a major public health prob-lem [1]. In 1997, the World Health Organization (WHO)estimated that 32% of the world's population wasinfected with Mycobacterium tuberculosis [2]. Tuberculosiswas a major cause of morbidity and mortality in Canadaearly in the 20th Century. However, with the introductionof anti-tuberculosis medications in the 1940's and 1950's,the incidence of TB disease declined significantly [3].However, after decades of continuous decline in TB rates,it has reached a plateau of 6 per 100,000 population, cor-responding to about 2000 cases per year [3,4]. Althoughthis rate of TB disease within Canada in global terms is rel-atively low, within special high-risk groups, rates exceedthose seen in many developing countries. In particular,high rates are seen among Aboriginal persons – both onand off reserve as well as among the foreign born and mar-ginalized inner city populations, especially injection drugusers [5-8].With the development of effective treatment strategies, thefocus of TB management has shifted from the preventionof mortality to the avoidance of morbidity. As such, thereis increased interest in the quality of life (QoL) experi-enced by individuals being treated for TB [9]. There arenumerous aspects of active TB that may lead to a reduc-tion in QoL. Treatment of active TB requires prolongedtherapy (at least 6 months) with multiple, potentiallytoxic drugs that can lead to adverse reactions in a signifi-cant number of patients [10,11]. Also, among foreignborn patients, there is considerable social stigma associ-ated with active TB leaving the individual feeling shunnedand isolated from their friends and families [12-14].Finally, among Aboriginal and marginalized inner citypopulations, there is a lack of knowledge regarding thedisease process and its treatment which may contribute tofeelings of helplessness and anxiety [15-17].Few studies have examined quality of life in patients withactive TB [18,19]. While these studies determined specificdecrements in the QoL in these patients, none haveincluded the mixture of patients (marginalized and for-eign born) treated within Canada. Therefore, the objectiveof our study was to identify areas of QoL that are affectedby active TB infection using focus groups and individualinterviews [20,21].MethodsDesign and SettingThis was a multi-site study involving three TB Centres inVancouver, British Columbia. Patients were recruitedfrom the TB Clinic at the BC Centre for Disease Control,Willow Chest Pavilion at Vancouver General Hospital andobtained from the University of British Columbia Behav-ioural Research Ethics Board and each subject providedsigned, informed consent to participate in the study.SubjectsSubjects with active TB who were receiving treatment wereeligible for recruitment into the study. Subjects who wereless than or equal to 16 years of age and who did not speakEnglish, Cantonese or Punjabi were excluded (interpretersfor non-English language participants who spoke theselanguages were available).ProceduresThe initial contact was be made by the study nurse at theindividual clinics. For those individuals residing in theinner-city region of Vancouver, gender-specific focusgroups were planned with 6–8 participants who hadactive TB. Each participant was reimbursed $25 for theirtime. Focus group discussions are a variation of interviewsdesigned for the purpose of gathering data about a specifictopic from a group of individuals. Each focus group wasled by an experienced facilitator.For participants who came to the TB Clinic at the BC Cen-tre for Disease Control (and those who were hospital-ized), individual interview sessions were conductedassessing similar information as obtained in the focusgroups. The reason for using individual interviews ratherthan the focus group approach was two-fold. Firstly, asthese individuals often had other commitments (such aswork or family care), assessments needed to be done atthe time of their appointments and could not be speciallyscheduled. Secondly, due to the cultural backgrounds,most of these participants did not wish to participate in agroup setting in which details of their disease and theirfeelings were explored. Each interview was conducted byan experienced interviewer in combination, when neces-sary, with an interpreter fluent in Cantonese or Punjabi.Specifically, in either the focus group or interview setting,the facilitator began the session with an open-ended,standard question that began all sessions (e.g. "how didyou find out you had TB?"). Using open-ended, probingquestions, participants were asked to discuss their experi-ences of being diagnosed with tuberculosis, what impactit had on their lives, issues around adherence to anti-TBmedications and information pertaining to their experi-ence with side effects to these medications. Each partici-pant was invited to comment on each question andprovide their perspective on the content area. At the endof each session, the facilitator summarized salient pointsthat arose during the discussion and invited further com-ments and discussion around these points and confirmedPage 2 of 10(page number not for citation purposes)the Downtown TB Clinic. All these clinics are part of theVancouver Coastal Health Authority. Ethics approval wasagreement.Health and Quality of Life Outcomes 2004, 2:58 http://www.hqlo.com/content/2/1/58Data collection and analysisFor all participants, data obtained were audio-recorded,transcribed verbatim, and analyzed. For participants whospoke Cantonese or Punjabi, field notes were kept by thenurse facilitators who are fluent in those languages.Constant comparative analysis was used as a method toexplore and identify patterns and themes that emergedfrom the data [21]. Various strategies were used to system-atically monitor the validity and reliability of the data. Datawere analyzed by two individuals experienced with qualita-tive data and consensus validation was used to confirm cat-egories and the matching of transcribed quotes withcategories derived from the analysis. Categories and tran-script matching were then reviewed by the focus groupfacilitator to further ensure that the categories made senseand represented the data they contain. The categories werethen collapsed and analyzed for emergent themes.ResultsWe conducted two focus group sessions, one with sevenmale participants and another six female participants; therest of the participants for the study underwent individualinterviews, including 4 hospitalized patients. In total, 39persons with active TB participated in the study. Thedemographics of the study participants are described inTable 1. The mean age was 46.2 years (SD 18.4) and 62%were male. Most of the participants were Canadian-born,either white or Aboriginal, while 38% were foreign-bornfrom South-East Asia, South Asia, Latin America andAfrica. The majority of participants were interviewed inEnglish (69%) and the rest required either a Cantonese(18%) or Punjabi (13%) translator. For the majority ofpatients, concurrent illnesses included HIV, Hepatitis B orC. Thirty-six percent of patients drank alcohol or usedillicit drugs on a daily basis. The majority of patients wasunemployed with an annual income of ≤$15,999 and amean level of education of 9.2 years of school (SD 3.1).Analysis identified four main themes comprising medica-tion related issues, diagnosis, social support and knowl-edge of TB. The following text provides a summary of thecontent of the themes with illustrative quotes in Table 2and 3.Theme 1: Diagnosis issuesThis theme describes issues related to the diagnosis oftuberculosis (Figure 1). Sub-themes were identified as'symptoms', 'health care provision', and 'emotionalimpact'.SymptomsThirty-five quotes pertained to symptoms experienced byexpressed the view that they were asymptomatic at thetime of being diagnosed. The most common symptomsexperienced by the respondents were cough (n = 13),fatigue/weakness (n = 5), fever/night sweats (n = 5) andshortness of breath (n = 4). Most patients sought medicalattention due to cough or "pneumonia-like" symptomsand feelings of general malaise. For example, one patientstated "I was coughing up harsh yellow stuff"; whileTable 1: Patient CharacteristicsParticipants (N = 39)Mean age, yrs (SD) 46.2 (18.4)Males, N (%) 24 (62)Foreign-born, N (%) 15 (38)Region of origin, N (%)Canadian – Caucasian 10 (26)Canadian – Aboriginal 14 (36)India/Pakistan 5 (13)South East Asia 8 (21)South America 1 (2)Africa 1 (2)Language used during interview, N (%)English 27 (69)Cantonese 7 (18)Punjabi 5 (13)Interview/focus group session conducted, N (%)Outpatient clinic 35 (89)Hospitalized 4 (11)Concurrent illness, N (%)HIV-positive 12 (31)Hepatitis B or C 12 (31)Diabetes mellitus 5 (13)Cardiovascular disease 3 (8)Cancer 3 (8)Epilepsy 1 (2)Alcohol or recreational drug use, N (%)Alcohol 8 (21)Drugs 6 (15)Employment status, N (%)Full-time 4 (11)Part-time 5 (13)Unemployed 20 (50)Retired 10 (26)Income≤$15,999 35 (89)$16,000 – $39,999 1 (2)$40,000 – $49,999 1 (2)≥$50,000 1 (2)Years of education, mean (SD) 9.2 (3.1)Marital status, N (%)Single 14 (38)Married 11 (28)Common-law 5 (13)Divorced 8 (21)Page 3 of 10(page number not for citation purposes)the participants at the time of diagnosis. Of these, 19 wererelated to specific symptoms whereas 16 participantsanother stated "I started to feel real tired and had a coldthat just wouldn't go away".Health and Quality of Life Outcomes 2004, 2:58 http://www.hqlo.com/content/2/1/58Four patients expressed that they were "unsure" how theyacquired TB. For example, a woman stated "I didn't evenknow I had it. I was surprised 'cause I felt real good".Other illustrative quotes are shown in Table 2.Health care provisionMost comments, related to the provision of health care ator around the time of diagnosis, were related to commu-nity health care providers and their initial hospitalization.Many patients expressed frustration with the health caresystem at their time of diagnosis due to lack of providerknowledge with respect to tuberculosis. Many patientseither felt that they had a delayed diagnosis or delayedtreatment due to issues related to their health care pro-vider. For example, on male patient stated, "Family physi-cians should know more about this disease...where towait for treatment. We were concerned and phoned theBritish Columbia Lung Association who referred us to theTB clinic". Another stated, "I contracted a flu-type infec-tion with fever. My GP said go home and take Tylenol butmy symptoms continued so I went to see the locum whotold me to take Advil. Then I started non-stop coughing. Iasked my GP to get an X-ray but he flatly refused."Many participants reported negative experiences withtheir initial hospitalization after being diagnosed with TB.Specifically, they stated feelings of isolation, rejection andboredom (Table 2). No participant gave a positive reportabout the initial hospitalization experience however one30 year old male participant stated "I had no negative feel-ings about my hospital stay but it hurt my financial situa-tion...but I knew I had to be there. There are laws againstTable 2: Selected Illustrative Quotes for Theme 1: Diagnosis Issues for TBTheme 1: Diagnosis IssuesSub-Theme: SymptomsCoughing"I felt tired all the time and had a cough that just wouldn't go away". (Female)"I had a really bad cough for 3 months and then I started coughing up blood. This made me scared so I went to the doctor". (Male)Fatigue/weakness"I just felt tired all the time. I did not have the energy to do anything". (Male)"I had fatigue and a continuous cough for 6 months. I thought I had persistent flu but then after a while the symptoms got so bad that I went to see a doctor". (Male)Fever/nightsweats"I had a fever and chest pain for 1 month; I thought this was pneumonia so I went to see my family doctor". (Male)"I had night sweats for several months and a fever so after a while I went to see my doctor". (Male)Asymptomatic"I did not know I had TB, I was really surprised because I felt really good". (Male)"I had a general examination and that's when I found out I had TB, otherwise I had no symptoms" (Female)Sub-Theme: Health Care ProvisionDelayed Diagnosis"I had a friend who was sick with TB in the hospital. I asked my GP to get tested but he did not feel I needed to. Anyway, I was negative but I knew something was wrong so I asked for a chest X-ray. He did not agree at the beginning but finally he did and that's when I found that I had TB". (Female)Hospitalization"I came out of a coma from meningitis and that's when they told me I had TB. They threw me in a TB ward at VGH which was worse then a prison. I didn't like the restrictiveness so I took off...the isolation was too much". (Male)"The only thing to do at the hospital was to eat and sleep. There are no programs there and you are confined in one area". (Male)"Everyone wears gloves and masks to come and see you, you feel like a leper". (Male)Sub-Theme: Emotional ImpactCalm, Accepting, or Apathetic"I was okay about it. I knew people who had this before and so I knew I would be in the hospital for a while but then after taking medicines I would be fine". (Male)"I felt calm and confident in the medical profession". (Male)Scared, or Afraid"I was scared of dying. My Grandma had it and she was in the sanitorium before she died of it". (Female)Shocked/Surprised, or Devastated"I was shocked. It was such a surprise because I was working full-time as a nurse in India before immigrating here and I was healthy". (Female)"I was devastated because I had another illness. I didn't feel that I deserved it". (Female)Worried/Concerned or Depressed"I was worried about passing it on to other people". (Male)"I was depressed because I had a daughter whom I could not see while in hospital". (Female)Page 4 of 10(page number not for citation purposes)refer patients to. This is an old disease". Another patientsaid, "Although my GP gave me a diagnosis, he told me toTB."Health and Quality of Life Outcomes 2004, 2:58 http://www.hqlo.com/content/2/1/58Table 3: Selected Illustrative Quotes for Theme 2: Medication Issues for TBTheme 2: Medication IssuesSub-Theme: Adverse EventsGastrointestinal Disturbances"I had lots of vomiting after I started taking the pills and didn't have any appetite". (Male)"I have to eat before I take my pills, if I don't then I feel sick and my stomach hurts". (Male)Itchiness"I felt itchy all over and was told to take benedryl but that made me really sleepy". (Male)"I had lots of itchiness when I first started taking the pills but it is better now and I put lotion on my skin". (Female)"I was so itchy with one of the pills that I could not sleep all night long for days". (Female)Sub-Theme: Ease of AdministrationSize of Medication"I felt physically sick because of the size of the pills; they are too big". (Female)"The pills are so big, it is hard to swallow them". (Female)"I feel nauseated when I take the pills because they are so large". (Male)"I can't swallow those white pills; I need to crush then otherwise I vomit it back up". (Female)Number of Medications"I thought that many tablets a day ...it is not possible to take on an empty stomach". (Male)" There were too many pills to take at once, especially at the beginning but now it is much better with just six to take in a day". (Female)Sub-Theme: ComplianceClinic-based patients"I was taking other pills so it was easy to take the TB medications too". (Female)"I did not forget to take my pills because I want to get better". (Female)"I understand the importance of taking the tablets so I do not forget; I take them in the mornings, half-hour before my breakfast". (Male)"I place it in my container the night before so that I remember to take it the next day". (Male)Inner-city Patients"I always take my pills since I get them with my methadone everyday". (Female)"The [street] nurse always finds us and gives me the medications". (Male)"If I've been drinking too much then sometimes I don't know what the time is". (Male)"If I'm picking empty cans and bottles on the other side of town, it's hard to get to [street nurse name] to get my pills every day". (Male)"I missed taking some pills because I was drunk or high on drugs". (Female)Main themes and sub-themes related to tuberculosis as identified through transcribed focus groupsFigure 1Main themes and sub-themes related to tuberculosis as identified through transcribed focus groupsTuberculosis Related IssuesDiagnosis Medication Social Support Health BehaviorAdverse Events Ease of Administration Behavior Modification TB KnowledgeFriends and FamilyAdherenceSymptoms Health CareProvisionEmotional ImpactORIGINAL TRANSCRIPTION OF FOCUS GROUPSPage 5 of 10(page number not for citation purposes)Health and Quality of Life Outcomes 2004, 2:58 http://www.hqlo.com/content/2/1/58Emotional impactThirty-five quotes pertained to emotions experienced bythe participants at the time of diagnosis. Of these, patientsexpressed a wide range of emotions from being calm,accepting or apathetic (n = 11), scared or afraid (n = 7),shocked or surprised (n = 6), "devastated" (n = 4), worriedor concerned (n = 4), and depressed (n = 3). Representa-tive quotes for these emotions are presented in Table 2.Of the individuals expressing apathy or calmness relatedto the diagnosis, many expressed that TB was just anotherdisease to contend with on top of other chronic condi-tions. For example, one patient stated "Well, it is like HIV.It is in my system. What can you do?" Another personwith terminal cancer stated "I had no reaction to the diag-nosis. I am more concerned with the spread of my cancerand that I don't have long to live anyhow".Of those expressing concern, there were two distinct rea-sons cited for this emotion: 1) concern for themselves asthey knew relatives or friends who had previously beeninfected with TB and had experience prolonged hospitali-zation or death; and 2) concern for others in terms ofpassing the disease on to family and friends. For example,a male patient said "I was kind of scared because the onlyperson I knew who had TB died of it. Also, I was worriedabout other people catching it from me". Another womanstated "I was scared. It is like an old disease and I knowwhen you have it, it is not very nice to have it, especiallybecause I have a seven month old baby."The individuals who expressed shock and surprise at thediagnosis attributed these emotions to their lack of symp-toms. As such, they had not expected a diagnosis such asTB when they have visited their health care providerdespite having other diseases such as HIV (see Table 2).Theme 2: Medication issuesThis theme discusses the most important factors withrespect to medications for the treatment of TB. (Figure 1).As such, the sub-themes identified were "adverse effects","ease of administration", and "adherence".Adverse eventsThere were thirty-nine comments related to adverse eventsexperienced by taking the medications. Most of these wererelated to specific symptoms that were thought to berelated to taking specific drug therapies. The most com-mon complaints were related to gastrointestinaldisturbances (nausea, vomiting and diarrhea) anditchiness due to isoniazid. Despite having adverse events,patients stated that they continued to take theirmedications. For example, one female patient said, "Theresentative quotes from these participants are included inTable 3.Ease of administrationMost comments related to the dose and dosing schedulepertained to the size (n = 3) and number of tablets/cap-sules (n = 7). For example, patients felt that the large sizeof some of the dosage forms (such as ethambutol andrifampin) led to gagging and vomiting. In addition, manypatients expressed consternation at the number of pillsthat they had to take with each dose. For example, onepatient said, "When I looked at ten tablets, I thought, onan empty stomach, I cannot". Representative quotes fromthese participants are included in Table 3.ComplianceIndividuals living in the inner city of Vancouver,expressed little concern for compliance-related issues asthey either picked up the anti-TB medications with theirmethadone or the Street-Nurses would find them daily toadminister the medications. As an example, one patientstated "It comes with my methadone. When I get that, I getmy TB pills". Another stated, "I never worry about it. Iknow [the Street Nurse's name] will bring it to me". How-ever, despite high compliance in these patients, severalidentified alcohol (n = 13) or other illicit drug use (n = 8)as being the reason why they had missed doses.Those who came to the TB treatment clinic expressed highcompliance due to the perceived gravity of the diagnosis.For example, one woman patient stated, "It is easy toremember because it is at the fore-front of mind. I want toget rid of it". Another person attributed compliance to thelaw: "I never forget to take my pills because I don't wantto go to jail". Representative quotes from these partici-pants are included in Table 3.Theme 3: Social support and functioningThis theme describes social support and functioningissues for the individuals with TB (Figure 1). Specifically,the impact on their relationships with family, friends andpeers was affected by TB. In addition, social functioningwas impacted through the ability to interact with friendsand family as well as engaging in social and leisurepursuits.Most participants expressed that their family and friendswere aware of their TB diagnosis (n = 18), while 11 statedthat only their friends knew and 10 stated that only theirimmediate family knew. Of those who stated that onlytheir friends were aware of their diagnosis, most of thesepersons residing in the inner city noted that they did nothave family with whom they communicated. Representa-Page 6 of 10(page number not for citation purposes)is nothing you can do. You have to just continue". Repre- tive quotes from these participants are included in Table4.Health and Quality of Life Outcomes 2004, 2:58 http://www.hqlo.com/content/2/1/58However, one individual stated that she was "secretivebecause other people will feel that I am contagious".Another male participant stated a reluctance to tell hisfriends because "I do not want go cause mass hysteria". Aschool-age boy did not tell his friends out of fear of beingshunned. In addition, he missed eight weeks of schooland had to retake several courses. In one instance, fear ofbeing shunned in a Punjabi speaking participant wasinstilled by the treating physician ("I was told by Dr. [phy-sician's name] that if my community knew, it wouldempty out the hall [referring to the religious prayer hall]".Another reported that his family "told me not to take mypills anymore because they make me sick" despite beingvery supportive and understanding regarding the diagno-sis. A Cantonese-speaking male stated that "I will be hap-pier once I am cured. Then, I can go out to restaurants andpublic places again."nosis of TB. Of these, most could be categorized as sup-portive or concerned (n = 21), although others hadnegative feelings such as fear (n = 7), shock or disbelief (n= 8), and anger (n = 3). One participant stated "my momwas really concerned but my friends did not believeit...they encouraged me to get the right diagnosis".Another stated that her partner had increased his readingon TB and was receiving regular skin tests although hermother and brother would not talk about the TB diagnosisor the clinic visits. Another stated that since his partnerwas not understanding about modifying his lifestyle, hewas forced to end the relationship with her and move out.Representative quotes from these participants areincluded in Table 4.Theme 4: Health behaviorThis theme describes health behavior issues for the indi-viduals with TB (Figure 1). Sub-themes were identified asTable 4: Selected Illustrative Quotes for Theme 3 and 4: Social Support and Health Behavior Issues for TBTheme 3: Social Support and FunctioningSub-Theme: Social SupportClinic-based patients"My family knows and they comforted me so I felt much better". (Male)"My wife was calm about it and this gave me support". (Male)"Mom was concerned for me since her grandmother had died of TB". (Female)Inner-city Patients"My friends stayed away when they found out, they thought I was contagious. I tried to tell them but still I did not see them again". (Male)"My friends do no want to hang around me. It's the fear of the unknown...they just know it's airborne and contagious". (Male)"My partner is okay with it because she has TB too". (Male)"I don't have any family except my aunt but she was scared to come and see me because she has two children". (Female)Theme 4: Health BehaviorSub-Theme: Behavior ModificationClinic-based patients"I run more. I was always a runner. The endorphins help". (Female)"Vitamins might interact with my medications so I don't take them" (Male)Inner-city Patients"I eat better... although with my income, this is difficult". (Male)"This diagnosis was a wake-up call to change my lifestyle. I now eat better and sleep lots" (Male)"I have been drinking more booze to help manage the side effects of the medications". (Female)"I drink bottled water and avoid tap water due to my depressed immune system" (Male)Sub-Theme: TB KnowledgeClinic-based patients"It is important to be cured but you can't get it again" (Female)"It is very important to get cured...if you aren't cured, you could die" (Male)"Family doctors should know more about TB. They didn't know what to do with respect to breastfeeding and TB. There really needs to more public education" (Female)"I don't think I have TB. My doctor told me I have it and now I have to take medications but I am not sure that I really have it" (Male).Inner-city Patients"Once you get TB, it's in your system" (Male)"As long as TB can be arrested ...not necessarily cured, that would be OK (Female)""People should be more active in spreading the word on the street that TB is still out there...there has to be more outreach programs" (Male)Page 7 of 10(page number not for citation purposes)There were 39 comments related to the reactions offriends and/or family members to the participants' diag-"behavior modification" and "TB knowledge."Health and Quality of Life Outcomes 2004, 2:58 http://www.hqlo.com/content/2/1/58Behavior modificationWhen asked if they had done anything else beyond medi-cations to help manage their TB, about half of the partici-pants stated that they had done nothing in particular (n =16). For example, a Cantonese speaking female stated "Ido nothing special as TB is very common". However, ofthe 12 participants who stated that they had changed theirhealth behavior, seven said that they consumed a health-ier diet, four stated that they exercised more, three tookvitamin supplements specifically to help their TB, and twoused less illicit drugs and alcohol. Representative quotesfrom these participants are included in Table 4.TB knowledgeIn response to the question "do you believe that you willbe cured of TB?", most participants (n = 33) stated thatthey believed that they would be eventually cured. How-ever, some individuals believed that their TB would neverbe cured ("I believe that I can keep it in remission but itcan't be cured") while others were not sure if it could becured. Two participants denied having TB despite beinginformed by health care providers and taking medication.There were comments regarding the participants' impres-sions of provider knowledge of which a representativesample have been included in Table 4.DiscussionThis qualitative study has revealed that TB has a largeimpact on affected individuals' QoL through issuesrelated to its diagnosis, treatment, social support andfunctioning, and health behavior. Specifically, we foundthat the domains of QoL that were affected by TB includedthose that are typically affected by most illnesses such asphysical functioning and emotional/mental well-being.However, TB patients' social functioning was also affectedthrough isolation, variable social support by family andfriends, and the ability to continue with social and leisureactivities. Also, the process of getting treatment for TBfrom the initial hospitalization to the daily medicationschedules adversely affected the lives of our participants,although, almost all recognized the need for appropriatetreatment.Although other studies [22,23] have explored patients'attitudes and knowledge regarding TB, we identified onlyone other study [24] where general health perceptions ofpatients with TB were investigated. Similar to ours, thisstudy also involved the use of focus groups to elicit areasof QOL affected by TB and many of their results were ingeneral agreement to ours. For example, as with our study,these investigators found that physical functioning, socialfunctioning, and role functioning were all adverselyaffected by TB. In addition, the participants reported anumber of comments regarding the difficulties of treat-ment including those related to the size, number and fre-quency of dosing of the medications.However, there were some important differences betweenour two studies. For example, these investigators includedonly 10 English speaking patients from the Baltimore cityarea and 13 health care providers whereas ours includednon-English participants through the use of interpreters, amuch large sample of patients (n = 39), but no health careproviders. In addition, we included hospitalized andambulatory patients from both inner city and publichealth clinic environments in order to assess the full spec-trum of patients afflicted with this disease. Finally, in ourstudy, all patients had active TB and were receiving treat-ment at the time of the interviews unlike the Baltimorestudy who recruited patients who were already cured andhad completed treatment. We believe that our methodol-ogy of interviewing currently afflicted patients might haveminimized recall bias although one potential advantageof the Baltimore approach was determining long-lastinginfluences of TB on patients lives (the investigatorsreceived 17 comments in this regard). Also, the use ofhealth providers in the Baltimore study added an interest-ing perspective with the provision of comments that were,at times, in direct contrast to those stated by patients withrespect to the effects of TB on health related quality of life.For example, most physicians underestimated the impactthat TB had on the QoL of patients assuming that, becauseit was curable, its detrimental effects would be minimal.These differences in design between the two studies mighthave accounted for some different findings. For example,the Baltimore study found that the financial well-being ofsome of the participants was adversely affected throughloss of income and health care expenses whereas partici-pants in our study did not report this issue (although thismight be attributable to the different health care environ-ments that exist between the two countries in which thestudies were conducted or differences in employment sta-tus between the two samples). Also, some of the male par-ticipants in the Baltimore study reported sexualdysfunction whereas this concern was not reported duringour interviews. Finally, patients in the Baltimore studyreported spirituality as an important domain which wedid not identify as an important theme, perhaps due tothe different ethnic/religious make-up of our sample.One surprising aspect of our results was the negative feel-ings associated with TB diagnosis and the initial hospital-ization. Some participants expressed frustration with theirprimary care physicians for the lack of a prompt diagnosisor inappropriate management. There was a common per-Page 8 of 10(page number not for citation purposes)wide range of psychological reactions including fear,depression and anger. Finally, both studies found aception among many of the participants that health careproviders needed more extensive education regarding TB.Health and Quality of Life Outcomes 2004, 2:58 http://www.hqlo.com/content/2/1/58We have recently commented on the need to consider TBas a diagnosis and in the appropriate setting, consider theinitiation of empiric TB treatment [25]. In addition, par-ticipants complained of boredom, frustration and isola-tion with their initial hospitalization. These modifiablefactors should be the focus on future improvements in thediagnosis and treatment of TB.Despite several negative comments regarding the size,dosing schedule and adverse effects of the anti-TB medica-tions, most patients specified that they understood theneed for treatment. As such, self-reported compliance wasvery high and participants reported a variety of differentstrategies to help manage adverse events. Our inner-cityparticipants expressed gratitude for the street nurses whodelivered their medications to them on a regular basis anddid not report the intrusiveness and imposition on life-style that has been associated with similar programs (suchas directly observed therapy or DOT) in other studies[24,26].Although most comments were related to adverse impactsof TB on QOL, some participants stated that acquiring TBhad resulted in positive health behavior modification.Many participants took the development of TB to be a"wake-up" call to change their lifestyle and improve theirhealth behavior by either eliminating or reducing drugand alcohol intake, increasing exercise, or eating better.These findings were also reported by the Baltimore studygroup suggesting that the positive health behaviorimpacts of this disease might be widespread throughoutthose afflicted with TB in North America. Because many ofthose afflicted with TB in North America engage in otherhigh-risk behaviors such as use of illicit drugs, the overalleffects of this health behavior modification might be sig-nificant. Future studies should attempt to quantify thisimpact on the downstream development of other condi-tions. Although hospitalization for management of TB hasnegative aspects we have noted that this interlude in sub-jects with a history of substance abuse allows access tochemical dependency treatment resources while awayfrom their usual chaotic environments.Although some studies in other countries have shown thatTB can result in job loss, participants did not report thatthis had occurred in our sample [27,28]. One possible rea-son for this observation could be due to low rate ofemployment in our sample with only 26% beingemployed full or part-time.Our study had some limitations. We examined a self-selected group of TB patients who may not be representa-tive of the entire population in Canada affected by TB. ForDespite this, we feel that we were able to get a representa-tive sample of foreign-born persons (almost 40% of oursample was foreign born) as well as a good cross sectionof marginalized inner city patients [7,29]. In fact, becausewe attempted to select individuals from different socioe-conomic groups (inner city patients vs. those voluntarilyattending a public health clinic) and from different ethnicbackgrounds (foreign-born, aboriginal-Canadian andother Canadian), we believe that the responses that wereceived are likely indicative of the areas of QoL which areaffected by TB.ConclusionOur study indicates that despite the ability to cure TB withmedical therapy, there still remains a sizeable impact onthe lives of afflicted patients. Since much of the currentattention on TB is spent on preventative or curative mech-anisms such as drug therapy, the impact of this conditionon QoL is either underestimated or rarely considered. Inorder to fully evaluate the outcomes that are achievedthrough TB prevention and treatment, QoL of thesepatients must be considered. Further studies need to buildupon these observations and instruments need to bedeveloped to better characterize QoL in patients with thisdisease. This process will not only provide an addedparameter to evaluate the effectiveness of a given pro-gram, but will also focus care providers to be attentive tothe non-medication aspects of TB management.Authors' contributionsCAM conceived of the study, participated in the design,analysis and co-wrote the initial version of the manu-script. FM conceived of the study, obtained funding, par-ticipated in the interviews and focus groups, participatedin the analysis, coordinated research staff, and co-wrotethe initial version of the manuscript. VC participated inthe interviews and focus groups and participated in theanalysis. AP participated in the design of the study, andthe interviews and focus groups. JMF participated in thedesign and analysis of the study. All authors read andapproved the final manuscript.AcknowledgementsThis study was funded by a competitive research grant from the Canadian Society of Hospital Pharmacists. Dr. Carlo Marra is a Canadian Arthritis Network Scholar. Dr. Palepu is a Michael Smith Foundation for Health Research Senior Scholar and a recipient of a Canadian Institute of Health Research (CIHR) Investigator Award. Dr. FitzGerald is a BC Lung CIHR Scientist and a Michael Smith Foundation for Health Research Distinguished Scholar.We would like to thank Dr. Anita Hubley for assistance with the initial design and analytic methods for the study. In addition, we would like to acknowledge the TB program nurses at the clinics (Ms. Shelley Dean, Ms. Nashreen Dhalla and Mr. Greg Stark) for aid in patient recruitment and Page 9 of 10(page number not for citation purposes)example, in British Columbia, foreign-born personsaccount for close to 70% of all TB cases in the province. helping to set-up the focus group sessions. Finally, we would like to thank Publish with BioMed Central   and  every scientist can read your work free of charge"BioMed Central will be the most significant development for disseminating the results of biomedical research in our lifetime."Sir Paul Nurse, Cancer Research UKYour research papers will be:available free of charge to the entire biomedical communitypeer reviewed and published immediately upon acceptancecited in PubMed and archived on PubMed Central Health and Quality of Life Outcomes 2004, 2:58 http://www.hqlo.com/content/2/1/58Ms. Surita Jassal and Mr. Ajay Puri for assistance with the interviews and the focus groups.References1. Dye C, Scheele S, Dolin P, Pathania V, Raviglione MC: Consensusstatement. Global burden of tuberculosis: estimated inci-dence, prevalence, and mortality by country. WHO GlobalSurveillance and Monitoring Project. JAMA 1999, 282:677-686.2. World Health Organization: WHO Report 2003: Global tuber-culosis control. Geneva, Switzerland. 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