1 NOTICE: This is the peer reviewed version of the following article: Rush, K.L., Oelke, N.O, Shay, M., & Reid, C. (2015). The Diverse Journeys of Rural Older Adults with Atrial Fibrillation. European Journal of Patient Centered Healthcare, 3(4), 487-495. doi:http://dx.doi.org/10.5750/ejpch.v3i4.1022 Title: The Diverse Journeys of Rural Older Adults with Atrial Fibrillation Name: Kathy L. Rush, PhD, RN (First and Corresponding Author) Job Title: Associate Professor Affiliations: School of Nursing, University of British Columbia Address: ART 150 - 1147 Research Road, Kelowna, BC V1V 1V7 Telephone Number: 250-807-9561 Fax Number: 250-807-9865 E-mail Address: Kathy.rush@ubc.ca Name: Nelly D. Oelke, PhD, RN Job Title: Assistant Professor Affiliations: School of Nursing, University of British Columbia - Okanagan Address: RHS 118 – 3333 University Avenue, University of British Columbia, Kelowna, BC, V1V 1V7 Telephone Number: 250 807-9880 E-mail Address: nelly.oelke@ubc.ca Name: Mr. Matt Shay, BA Psychology (Honors) Job Title: Research Assistant Affiliations: Psychology - Irving K. Barber School of Arts and Sciences Address: ART 283B - 3333 University Way, University of British Columbia, Kelowna, BC, V1V 1V7 Telephone Number: 250-807-9367 E-mail Address: matt.shay@ubc.ca Name: Robert Colin Reid, PhD Job Title: Assistant Professor Affiliations: School of Health and Exercise Science, University of British Columbia - Okanagan Address: RHS 110 – 3333 University Avenue, University of British Columbia, Kelowna, BC, V1V 1V7 Telephone Number: 250-807-9910 E-mail Address: colin.reid@ubc.ca Suggested Running Title: Diversity of Atrial Fibrillation Journeys Keywords: Patient Journey, older adults, atrial fibrillation, cardiac, rural, health service delivery 2 The Diverse Journeys of Rural Older Adults with Atrial Fibrillation Rationale, Aims, Objectives: Atrial fibrillation (AF) is a serious chronic heart condition characterized by an irregular, rapid heartbeat and unpredictable course. Patients with AF often struggle with managing the impact of the disease on daily activities. Afflicted rural dwelling patients face added challenges including inequities in health services and a lack of cardiac specialty services. AF patient journeys through the health care system have not been well documented but offer a valuable tool for improving patient management and outcomes. The purpose of this study was to document individual AF patient journey of rural living older adults. Method: This study used a 6-month longitudinal design to examine the rural health-care experiences of 10 AF patients. AF patient journeys were mapped using information gathered through interviews, written logs, photographs, and an electronic health record review. Thematic analysis was used in clustering common features of the health care journeys of older adult patients with AF and a typology developed to describe them. Results: Each patient’s journey with AF was unique. Symptom and disease severity, health service utilization, and needs emerged as differentiating features in the identification of three journey types: 1) Stable, 2) Chronically Unstable, and 3) Acute Crisis. Conclusions: These journey types provide a valuable tool to assess patient needs at any point in the AF trajectory and to address salient risks that accompany each type to improve management of the increasing number of persons suffering from AF. 3 The Diverse Journeys of Rural Older Adults with Atrial Fibrillation Introduction The patient journey has become an important patient centered approach in health care to inform the development of more integrated approaches to service delivery and improve the quality of care. It has been used to capture patients’ experiences of living with a health condition, their responses to it over time 1, their health trajectories 2, and their encounters with the healthcare system. 3,4 Patient journeys have primarily been used to address care gaps and to improve the health care experience for patients of varying ages and health conditions, such as acquired hearing impairment/loss, 2 prostate cancer, 1 lymphoma, 5 rheumatoid arthritis, 6 and chronic obstructive pulmonary disease. 3 The patient journey has also been suggested as an innovative method of ongoing risk evaluation to direct proactive care in addressing risk rather than ‘after the event’ characterizing current episodic care. 7 The majority of studies have documented the patient’s journey using patient journey modeling tools or pre-existing templates to visually map the patients’ pathway through the system. Such visual representations have been valuable in identifying system gaps such as delays in diagnosis, referrals, treatment initiation, the quality of primary and specialty care management 6 and lack of care integration such as access to, and coordination of inter-professional care. 3 A number of studies have tracked patients journeys with acute health events over short, well defined periods of entering, experiencing, and exiting the health-care system such as that associated with vascular 8 or orthopedic 9 surgical procedures. Most of these were completed retrospectively. Few studies have followed patients with chronic diseases with uncertain trajectories prospectively over time. Jackson, Oelke, Besner, and Harrison 3 tracked the post-hospital discharge journeys of four older adults with chronic obstructive pulmonary 4 disease prospectively and continuously for three months through the use of patient logbooks and interviews. They found that the patient journeys were complex and characterized by multiple provider visits in a variety of settings and by difficulties in accessing and navigating the healthcare system. Martin and colleagues 7 further reflect the complexity of patient journeys among high-risk patients with chronic diseases in a typology characterized by four different phases that include simple, complicated, complex and chaotic phases based on 28-day monitoring of health care use, social support, medication and medical care issues. Atrial Fibrillation Atrial fibrillation (AF) is a serious chronic heart condition characterized by an irregular, rapid heartbeat and unpredictable course and is well suited to capturing the patient journey over time. It is the most common arrhythmia in older adults, peaking between the ages of 65 and 85 10 and is associated with variable symptoms such as heart palpitations, rapid heartbeat, shortness of breath, fatigue, dizziness, and lightheadedness. While symptoms are generally not life threatening, AF increases ischemic stroke risk by 3 to 5 times, 10 and accounts for 15-20% of all strokes.11 AF often begins with independent, short events that resolve in less than 7 days but over time, progresses to persistent episodes requiring more aggressive treatment (e.g., medications, cardioversion) 12 and is associated with relapses. Patients with AF often struggle with management of the unpredictable nature and course of symptoms and the heavy impact the disease has on day-to-day activities.13 Patients with AF have reported negative experiences with the health care system including delays in diagnosis, inadequate emotional support, yet self-manage their condition despite gaps in knowledge and a minimization of their concerns. 14,13 These health care system challenges may be accentuated for older adults with AF who live in rural communities that have well documented inequities in 5 health services 15 and a lack of cardiac specialty services.16 Yet little is known about the AF patient journey through the health care system over time and especially for older adults living in a rural context. The purpose of this study was to use a patient journey framework in order to evaluate the experiences of older adults with AF navigating a rural healthcare delivery system. Methods Design This “journey” arm of the study was part of a larger mixed methods study designed to evaluate healthcare delivery/integration of older adults living in a rural area from the perspectives of patients, health providers, and decision-makers. The present study used a 6-month longitudinal design in order to examine the issues, challenges, and risks associated with rural health-care from the perspectives of a group of patients living with AF. AF patient journeys were mapped using information gathered through interviews, written logs, photographs, and an electronic health record review. Sample and Recruitment Following a joint ethics approval by the University of British Columbia Okanagan and Interior Health (Ethics Number: H13-00417), participants were recruited with the help of two primary care physicians with practices located in two rural British Columbia communities. As per Statistics Canada’s definition of population centres, 17 both communities were considered rural with populations between 2,955 and 6,723 (consistent with Statistic Canada’s small population centre between 1,000 and 29,999) and densities of 110.7/km2 and 275.3 km2 (well below the small population density of > 400/km2). Physicians identified and invited all eligible older adult patients with AF from their caseloads, introduced the study, and provided consent for the research team to contact patients. Patients were given the option of participating in the 6-6 month patient journey or in a single focus group. Patients met inclusion criteria if they were 65 years of age or older, lived in a rural area, were diagnosed with AF, and had a CHADS2 (Heart Failure, Hypertension, Age, Diabetes, Previous Stroke) stroke risk score of 1 or above. Patients were excluded if they were non-English speaking, were diagnosed as cognitively impaired or had hearing impairment severe enough to make telephone interviews problematic. Three of 35 patients in one practice and 7 of approximately 30 patients from another practice consented to participate in the journey aspect of the study. The primary reasons the remaining prospective patients did not participate are they were cognitively impaired, lacked interest, or were unavailable at the time of the study. Data Collection Older-adult patients who were screened by their physicians and agreed to participate were contacted to make arrangements for an initial intake session in their own home. During this session patients provided consent, were orientated to study components (telephone calls, logs, photos), and participated in an introductory interview to elicit highlights of their AF health care journey retrospectively up to the current point in time. Patients’ self-reported demographic information and completed baseline measures of independent function, 18,19 cognition, 20 depression, 21 and health-related quality of life. 22 These measures were taken again during the final interview to allow for the assessment of any changes over the 6-month study period. During the study period, participants kept logs and took pictures of phenomena representative of their health-care journey related to AF. Logs documented the type, reason, outcome, time to contact or interactions with professionals or non-professionals related to AF, plan for follow-up and any photos taken in conjunction with these contacts. Approximately every two weeks, participants sent copies of their logs and photographs to the research team, who then 7 contacted the participants via telephone for an interview to discuss events and experiences that they identified as salient. The logs were designed to serve as memory aids during the journey telephone interviews, in the event that patients forgot details of their interactions. At the end of the six-month journey period, one final face-to-face interview was conducted with each participant. Patients were asked to reflect on their health-care journey and to consider how the health care system could address their needs, values, preferences, and desired outcomes. Data from participants’ primary care electronic health records was obtained over the six months to validate patients’ self-reported data and to ensure a complete and accurate accounting of their experiences and interactions with health care providers and system. This information included number of physician visits, specialist referrals, and laboratory and diagnostic tests. Data Analysis Demographic, baseline and 6 month measures of depression, function and quality of life were analyzed using descriptive statistics. Dependent sample t-tests were used to compare changes in the measures over time. Journey interviews, logs, and electronic health record data were analyzed thematically 23 for each participant. Photographs, part of the overall analysis, were not included in this sub-analysis of journey types. Data were coded specifically for interactions with the formal health care system, and salient activities and events related to their AF. Similar codes were clustered to generate themes, which became the initial coding schema, and used Nvivo 9 TM to code within and across transcripts. These were subsequently compared for similarities and differences across participants. Patients with similar patterns and characteristics were classified according to a specific typology. Results Descriptive and Quantitative Data 8 Participants included 10 older adults, ranging from 65 to 86 years of age from two rural communities. Six women and 4 men comprised the sample; 9 were white and 1 Aboriginal. Patients were predominantly widowed or divorced/separated (N = 8, 80%), and over half lived alone. Patients had a mean of 4.1 (SD 2.33) comorbidities, with arthritis and blood pressure the most prevalent (N = 7), followed by diabetes (N = 5). Patients took from 4 to 12 medications (M= 8.3; SD 2.58), nine were on warfarin and one was on a novel oral anti-coagulant. Patients self-reported good to excellent physical (N = 7) and mental health (N = 8). Patients’ reported function, quality of life, and depression scores at baseline and at the end of the 6-month data collection period, are displayed in Table 1. Depression scores decreased (t=2.899, p=.018) and quality of life scores increased (t=-2.987, p=.017) significantly over the 6 months. Journey Types Patient journeys for the 10 participants started well before the 6-month study timeframe with AF onset ranging from approximately 2 years to 25 years ago. Six patients traced the beginning of their journey with AF to a specific time, place, and event. For three patients AF began with an abrupt and unexpected onset that involved emergency care and a period of hospitalization, two experienced abnormal symptoms during work related activities, and for one it was detected during a routine checkup. The remaining four with longer histories could not remember the exact origin of their AF. All patients were receiving medications that they reported were generally managing the condition well; although medication or dosage changes at various times over the course of their journeys were common. Two patients had been treated with ablation and cardioversion procedures prior to participation in this study with one patient anticipating an ablation in the near future. The ten participants were categorized into three general journey typologies: 1) Stable, 2) 9 Chronically Unstable, and 3) Acute Crisis. Typologies were differentiated according to the stability of their AF disease process and related treatment (e.g., International Normalized Ratio [INR] , medication regimen) that was manifested in their symptom profile and contact with providers. Symptom profile included the presence, severity, and impact of symptoms on their daily lives, and provider contact included both the number and types of formal health care service interactions. Patient health care interactions are presented in Table 2. These journey types will now be elaborated and representative examples of each type of participant journey will be visually presented. Stable. Six participants were categorized as having Stable AF journeys (see Figure 1). During the 6 months, participants in this category were largely asymptomatic and did not experience the impact, intrusion and inconvenience of AF on their daily lives. A 65 year-old male with a 15-year history of AF, described, “I don’t have an awful lot of interference with AF in my life.” These patients had stable INRs that required less access to lab services, fewer medication changes, and less overall contact with their providers. In some cases, stable medication usage meant gaps of up to 8 weeks between lab tests, fewer than other journey types. Patients with Stable journeys had 1 to 6 co-morbidities (mean 3.8 SD 1.92) and their formal health contacts were primarily for routine check-ups, diagnostic tests, INR monitoring and non-AF complaints such as mild stomach upset, knee or back pain. On average, the stable journey patients had 14 contacts with healthcare providers across the six months, with the most common (55.7%) being for Warfarin related INR monitoring. Stable journey participants reported fewer concerns about their future, and were hopeful that their relatively good current health would continue as one participant summarized, “everything seems so good right now and that's how I hope it stays.” 10 Stable journey participants were able to “push [AF] to the background.” Although AF had been a worry and preoccupation for some of them in the past (and recent past), that was not the case in the present and they described not dwelling on it and getting on with life. These participants had an outward focus with most of them on the go, busy, involved, and enjoying life (without overdoing it) in their small communities. A 77-year old female with a long history of AF described the secret of managing it as keeping busy and not thinking about it. An 86-year old female, with a 3-year history of AF passionately stated, “I have other things [besides health and clinic] in my life. It helps that we’re part of these things and taking part… I’m interested in everything.” A 68-year old male participant with a 15-year history similarly reflected, “I don’t want to spend my life worrying about, do I take that pill or this pill or get something that would maybe treat this a little bit and play doctor and… no, I want to get out and enjoy life and get on with it. I like to be involved. I like to know what’s going on.” The greatest risk for these patients was their stable and asymptomatic status, which at times contributed to less vigilance in taking warfarin and having routine INRs performed. Chronically Unstable. The second type of AF journey, Chronically Unstable, involved a pattern of good days interspersed with bad days (see Figure 2). The three participants who were classified as this journey type had vacillating AF symptoms that were unpredictable with disease flare-ups often occurring spontaneously and without discernible reason. Often complicating the journey of Chronically Unstable participants was the co-occurrence of multiple chronic co-morbidities, with flare-ups of AF often occurring at the same time as other health issues became active. Patients with Chronically Unstable AF journeys had a mean of 5 (SD 3) co-morbidities (range: 2-8) and were frequent users of health care services with over three times the mean 11 number of health care contacts (n=45) of Stable journey participants. They had a high number of variable, formal health care service interactions and contacts including primary care and specialist appointments, on-call physician visits, emergency departments, INR monitoring, home visits, and telephone contacts, related both to AF and the other comorbidities. Chronically Unstable journey participants had an ongoing pattern of symptoms in which AF was never completely relegated to the background. Although symptoms had decreased in frequency and intensity and patients had “learned to live with them,” take them “one day at a time,” and to keep on going, they were an ongoing presence in their lives, arising daily, weekly, monthly and often were enigmas to manage. Symptoms occurred during rest or activity and sometimes manifested as a pounding heart, racing heart, or dizziness and patients contrasted experiencing “light” symptoms with “bad fibrillation” days. A 74-year old female described often experiencing her heart pounding at night while a 77-year old male participant, with a 2-year history of AF described, “The symptoms I have almost every other day. Some days I don’t have it, some days I have it, maybe two or three times during the day I still have to keep going and see how we can improve …maybe with ablation or whatever they recommend to me.” Two female participants with multiple co-morbidities dealt regularly with the ups and downs of AF during the 6-months of the study. Treatment included medication adjustments, holter monitoring, stress testing, and in some instances involved “bad” episodes that necessitated emergency care. Chronically Unstable journey patients had the greatest need for ongoing types of support - informational, emotional, and social support – compared with other groups. Their inexplicable symptoms and uncertain triggers left them with ongoing questions and the need to make sense of 12 why and when AF was happening. For example, a 74-year old woman with an 8-year history of AF queried: “why did my heart start to pound after I got into bed? You know, when you don’t think you’ve done anything.” Chronically unstable journey participants expressed interest in hearing the stories of others with AF, whether through videos, the internet, or a support group, not only to compare and share experiences but to learn about some of their self-management practices. A Chronically Unstable male participant who found his AF symptoms differed from others wanted a second opinion and prepared himself for that possibility by becoming very familiar with his history during a visit with his GP. Both formal and informal support was often key to helping the Chronically Unstable journey participants manage the unpredictability. This support came from primary care physicians, family, housework helpers, or professionals who worked with the First Nations Band. Acute Crises The third type of AF patient journey (N = 1), Acute Crisis, had extended periods of stability (asymptomatic, few or no health contacts) that were punctuated by one or more crisis situations that required ambulance transportation, emergency care and/or hospitalization (see Figure 3). Although the Acute Crisis type characterized only one participant during this 6-month study timeframe, two patients from the stable type described such a pattern with emergency care and multiple hospitalizations for AF in the previous 1 to 1 ½ years; they are included in the typology description. The acute AF crisis journey was characterized by progressive symptom intensity and frequency over time. This journey type was characterized by multiple formal health care service contacts prior to and during the crisis situation, including multiple emergency room visits. These patients had an intense need for support and reassurance as they dealt with steadily intense and intrusive symptoms. They were especially prone to second-guess themselves when 13 their symptom experiences and associated fears were not validated by the health care system. Following resolution of their emergency situations these patients resumed periods of stable health and their subsequent formal health-care system interactions generally involved follow up investigations and check-ins. They utilized formal healthcare services a mean of 31 times, more often than did Stable journey participants, but not as often as the Chronically Unstable patients. A 65-year old male participant with one co-morbidity exemplified the acute crisis journey type. He was diagnosed with AF approximately five years ago, but had no specialist referral at the time. His journey began with atrial flutter that eventually developed into atrial fibrillation. At first he failed to recognize the severity of his symptoms and to seek health care but as symptoms gradually became more severe it prompted an ED visit, at which time his AF symptoms disappeared and no treatment was initiated. This experience undermined his confidence in assessing its severity, “The only thing is when you have [atrial fibrillation] and you’re not sure how serious it is… Because I did go one time and ya… I had atrial fib, slide me into a bed and … now, an hour later I was good. It went away. So now it looked like I kind of wasted everybody’s time”. The crisis point of this participant’s journey was an acute flurry of heart episodes he described as “flutters” that increased in frequency and severity until they prompted a visit to the local emergency department, transfers between ambulances and hospitals to access resources when specialty services were not readily available in the rural community and a 5-day hospitalization, involving 16 formal health contacts. This type was characterized by multiple health care contacts during the crisis situation including paramedics, nurses, doctors, and technicians, precipitated by the need for transfers between ambulances and hospitals. Once the crisis was 14 resolved, the patient returned to his normal activities including resuming truck driving and campouts and kept a routine of medication that alleviated his AF symptoms. Figure 3 shows the surge in activity surrounding the crisis event, and the return to a healthy equilibrium represented by fewer and fewer health interactions. Discussion The patient journey was a valuable way to move beyond episodic care to provide a broad understanding of the AF patient healthcare experience. 3 There was no typical health care journey that described rural older adult participants’ experiences with AF but each patient had a unique journey across a wide range of services. From the multiple sources of data used in creating the patient journeys of patients living with AF emerged similar patterns of symptoms, health care utilization and salient needs across time or journey types: Stable, Chronically Unstable, and Acute Crisis. This classification is not a static representation but captures the dynamic AF patient journeys and the unique needs of participants related to each type. Although patients were classified as belonging to one type during the six-month period, their retrospective accounts reflected movement between the journey types. Some patients had had sustained periods of stability while others, who described remarkable stability during the 6-month study period had experienced considerable instability within the two years prior to the study. Although researchers 24 have observed that unstable disease is the rule rather than the exception, the current findings indicate that the AF journey can be characterized by varying periods of stability that can range from months to years. Not only are patient journey types valuable clinical tools for assessment of AF patients’ unique challenges and needs, but they have also been identified as important in risk evaluation.7 The three AF journey types in this study are comparable to those proposed in Martin et al.’s 7 15 journey typology (simple, complicated, complex, and chaotic) each associated with specific risks. The stable participants in the current study, similar to Martin’s “simple” type, were well, functioning and stable with their associated formal care primarily directed to maintenance, responding to minor, easily resolved health issues, and preventative of AF complications such as stroke. Stability depended on patient vigilance in their AF self-management, such as with oral anti-coagulants and lab work. Non-vigilance posed the greatest risk for Stable journey patients with the need for ongoing support, such as a reminder system to maintain these practices, without interfering with their need to get on with life. Chronically unstable journey participants reflect Martin’s complicated and complex types, involving worsening or unpredictable disease activity and requiring more active monitoring and treatment interventions. Compared to the stable group, these participants had a high number of variable, formal health care interactions and contacts due to increased symptom activity and severity 25 from both AF and non-AF conditions. Their higher healthcare utilization is consistent with recent research in which patients with AF had more hospital days and outpatient visits than patients without AF with most of their utilization attributable to non-AF related conditions, particularly cardiovascular co-morbidities. 26 Constantly on the edge of chaos as they entered and exited the health-care system, and encountered multiple health professionals, participants with Chronically Unstable, complex journeys were constantly at risk of further destabilization. Formal and informal supports played an important role in the management and control of AF and co-morbidities to prevent them from spiralling out of control. Ensuring provider consistency and inter-professional collaboration and available informal supports are priority considerations for risk mitigation with Unstable journey patients. They also have important unmet information needs, well documented in older adults, because of the uncertain, 16 inexplicable nature of their symptoms. 13 Finally, the third AF type uncovered in the current study was Acute Crisis. The Acute Crisis type is characterised by an extreme, acute episode of poor health that requires access to emergency services and may be life threatening. In Martin et al’s 7 words, the chaotic journey is a state of chronic illness that carries a “high risk of leading to death, but also may revert back to a stable trajectory or to an ongoing but increasingly unstable health journey” (pg. 521). In this study, the one patient who had an acute crisis experienced a health episode, received treatment, and returned to a Stable journey type. Compared to Chronically Unstable types, they had less frequent but more urgent need for access to services due to their sudden yet protracted need for emergency care. It is the acute crisis journey AF patient that may be at greatest risk of fatal outcomes, when urgent care needs cannot be met in a timely fashion in rural communities due to health systems that often lack cardiac services and suffer from physician and health provider shortages. 27 Changing symptom patterns, particularly increasing intensity and frequency, signal special attention particularly for rural patients to avert reaching a crisis situation. Ongoing formal monitoring through the use of mobile technology may be warranted for these patients to mitigate risk.28 Limitations Although the journey methodology revealed three types of AF journeys, the typology was generated from the six-month journeys of 10 older adult patients from rural primary care practices and has yet to be validated with a larger sample of patients and cross-section of ages. Such validation work is important to determine whether the full spectrum of typologies has been identified and to establish a stronger basis for developing strategies and interventions specific to the journey types. The journey methodology allowed for tracking of salient aspects of the AF 17 journey but represented only one aspect of participants larger health journey. Initial insights into interactions between AF and other co-morbidities warrant further attention. Conclusion Mapping the patient journeys of rural older adults with AF gave valuable information about their health care experiences and interactions over time. The AF patient journey revealed patients at different points with unique needs, requiring specific approaches. Risk was inherent to each AF journey type and was a product of both the patient and the system. 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Journal of the American Heart Association, 3, e001006 doi: 10.1161/JAHA.114.001006 27Tu, K., Gong, Y., Austin, P.C., Jaakimanian, L., Tu, J.V. & the Canadian Cardiovascular Outcomes Research Team (2004). An overview of the types of physicians treating acute cardiac conditions in Canada. Canadian Journal of Cardiology, 20(3), 282-291. 28Lindsberg, P.J., Toivonen, L., & Diener, H-C. (2014). The atrial fibrillation epidemic is approaching the physician’s door: will mobile technology improve detection? BMC Medicine 12, 180 22 Table 1. Older Adult Journey Measure Data Baseline 6 Months Mean SD Range Mean SD Range Geriatric Depression Scale 10 0-15 2.80 2.44 0 – 7 1.50 1.84 0 – 6 Katz Activities of Daily Living 10 0-6 5.90 0.32 5 – 6 5.90 0.32 5 – 6 Lawton Instrumental Activities of Daily Living Scale 10 0-8 7.90 0.32 7 – 8 8 0 8 – 8 AF Quality of Life Total Score 10 0-100 71.40 20.31 31.48 – 94.12 77.41 18.26 38.33 – 99.17 23 Table 2. Type and Frequency of Health Care Contacts During Six-Month Journey Participant Primary Care Physician or Walk-in Clinic Specialist1 Diagnostic Lab Hospital or ED Home Care ChiropractorPhysiotherap Stable 1 4 0 2 14 0 0 0 2 2 0 3 11 0 0 0 3 5 2 0 8 1 0 4 4 2 2 0 6 0 0 0 5 2 0 0 4 0 0 0 6 11 0 0 3 0 0 0 Chronically Unstable 7 6 5 12 32 2 1+ 1+ 8 13 4 3 14 1 6 5 9 17 2 6 5 0 0 0 Acute Crisis 10 7 3 10 9 2 0 0 1 Specialist visits include internist, cardiologist, surgeon, dentist, ophthalmologist, optometrist, obstetrics/gynecology 24 Figure 1 Stable Journey Map 25 Figure 2 Chronically Unstable Journey Map 26 27 28 Figure 3 Acute Crisis Journey Map 29