Abstract
Continuity of care is the cornerstone of all modern HIV disease management guidelines. Interruptions in care due to disengagement or moving between HIV care centers are common occurrences often contributing to poorer health. In order to understand why patients disengage from HIV care we first document movement into and out of our regional population since 2001 and then interview returning patients about their underlying motivations leaving or transferring care. Overall, 47% of all patients either disengaged (i.e., lost-to-follow-up) or moved away from local HIV care; 16% returned. Motivations and underlying reasons stated by patients who moved were different than for patients who disengaged from care. “Feeling well’ and ‘loss of interest’ most often led to dropping out of care, whereas as employment or family issues predicated more formal moves. Reengaging to HIV care was commonly related to health concerns. Understanding patient's motivations underlying discontinuation of care will help provide insight into the reasons that patients themselves find important thus improving outcomes.
Introduction
E
Although laudable, these guidelines are often not attainable. Gardner et al. 3 have estimated that, in the United States, of the 79% of individuals who know their HIV status, fewer than 30% are actually receiving ART as graphically depicted in the ‘cascade of care’ model. The reasons why individuals diagnosed with HIV are not retained in care, or why experienced HIV patients (i.e., patients who have accessed HIV care at some point) are not receiving ART, is multifactorial yet not fully understood. Studies 12 –17 examining issues surrounding retention in care have focused primarily on demographic or clinical markers that identify individuals or populations who may be at greater risk for disengaging in care, or being ‘lost to follow-up’ (LTFU). While these approaches are very useful and statistically or epidemiologically correct for descriptive studies, they do not describe, or elucidate underlying factors or motivations of the patients themselves for leaving care that need to be addressed to improve patient outcomes. Having a detailed understanding from the patient's perspective regarding reasons for disengagement is an essential first step for accurately improving patient retention and continuity in care.
Continuity of care is not simply of importance for local patients remaining in the HIV care center's catchment area, but is also important for patients needing to maintain continuity of HIV care when they out-migrate from the area and transfer care to another center. The examination of migration or movement between HIV care centers within the context of continuity of care issues has not been fully addressed. Most studies have focused on the substantial numbers of patients disengaging locally from care becoming ‘lost to follow up’ (LTFU). Fewer studies have examined patients who migrate between regions or HIV care centers within the same country. 18 –20 Experienced HIV patients who move often delay or disengage in HIV care for extended periods of time before reengaging in HIV care negatively impacting health. 21 Thus, tracking both patients who become LTFU and who move becomes important to ensure better health outcomes. Recording the reasons why patients disengage locally or delay accessing care when moving from the patients' perspective allows insight into how to better connect out-migrating patients with other care centers and ultimately promote continuity of care.
In this study, in order to better understand the related themes of retention or engagement in care, and continuity of care for patients who leave or move, we first recorded all movements into and out of our regional HIV population (i.e., ‘churn’) over a 13-year period, distinguishing patients who move from those who were LTFU. We then recorded responses made by experienced HIV patients in direct interviews who had previously left and subsequently returned to our HIV care after an absence of 1 year or more. We examined the reasons and motivations for disengaging or leaving care, where or if patients accessed HIV care while away, and the motivations for returning to HIV care. By including patient perspectives (i.e., an emic view 22 ) with biomedical parameters (i.e., an etic view 22 ), we feel that a more accurate assessment of the social motivators for interruptions in care can be determined. This approach can assist efforts made to improve retention and continuity of care by including the patients themselves in the development of more effective strategies towards engagement in HIV care.
Methods
Setting and study populations
All HIV positive individuals living in southern Alberta, Canada, are referred to the centralized HIV program at the Southern Alberta Clinic (SAC), Calgary, Canada, for HIV care, and are automatically enrolled in the Southern Alberta Cohort. Patients sign an informed consent form allowing the use of administrative data in research projects as approved by the University of Calgary Ethics Committee. SAC provides free access to all HIV services including ART for eligible (i.e., Alberta residents or those transferring from other parts of Canada) individuals under universal health care. SAC serves all individuals living with HIV in the geographic area with the nearest alternative HIV care program located 300 km (180 miles) away.
In order to document the extent of movement in and out of the region (i.e., “churn”), all patients >16 years of age who attended a routine clinic visit at SAC between January 1, 2001 and January 1, 2014 are included in the study population. Patients were followed from their initial visit to SAC until they either moved out of the region, became LTFU (lost to follow-up), died, or until January 1, 2015, the study's end date. Patients were considered as ‘moved’ if they formally notified SAC of their move or if a request for records was made from another HIV care center. Patients followed at SAC who did not have a routine clinic visit or any contact with the clinic for >365 days were considered LTFU.
Patients were categorized into three groups based upon their status at last clinic contact date or as of January 1, 2015: (1) Retained patients: patients who initiated care at SAC and who were continuously followed (i.e., one or more routine clinic visits within a 365-day time span) from their initial visit until they either died or until the end of the study period. (2) Patients who left SAC and did not return: patients who attended at least one routine clinic visit but had no clinic visit or contact for ≥365 days, and had not returned to the clinic before January 1, 2015. (3) Returning patients: patients who attended at least one routine clinic visit, followed by a disengagement of clinical care at SAC for ≥365 days but subsequently returned to SAC prior to January 1, 2015.
Patients with multiple episodes of leaving and returning to SAC were categorized by their status as of January 1, 2015. Patients were further classified as ‘moved’ or ‘LTFU’ as of their last contact with SAC.
In order to document the underlying reasons for leaving and returning to care at SAC, a second study population was defined and consisted of experienced HIV patients returning to care at SAC (i.e., category 3) between January 1, 2012 and January 1, 2015. All returning patients were identified and, when possible, were interviewed at their first routine clinic visit after returning to care.
Demographic and clinical variables
Demographic and clinical characteristics for both study populations included the age of the patient in years at time of initiating HIV care at SAC, gender (male or female), self-reported ethnicity (Caucasian or non-Caucasian), country of birth (Canada or other), education level (<12 years, 12 years, >12 years of education), most likely HIV risk factor (MSM=men having sex with men, MSW=men having sex with women, IDU=intravenous drug use, Other), viral load, and CD4 count. Suppressed viral load is defined as <500 copies per millimeter. Data were collected at a patient's initial visit and updated at subsequent clinic visits.
Patient responses
Structured interviews were conducted with a convenience sample of patients returning to care at SAC between October 1, 2012 and January 1, 2015. Interviews were conducted by a registered nurse or clinic social worker at the first visit upon return to the clinic. Patients were first asked “Where were you (when you were away from the clinic)?”. If patients had remained in southern Alberta (inside the catchment area for SAC), they were asked why they left and why they did not visit SAC for HIV care. If patients had moved outside southern Alberta, they were asked where they moved to and if their move was planned or spontaneous. All patients were asked if they accessed any medical care (HIV care or otherwise) during their time away from SAC, and where they accessed care. All patients were asked their reasons for returning to SAC for HIV care. Patients could choose one or more of a series of structured responses or provide a free text open ended response.
Patients who remained in southern Alberta but did not access HIV care were categorized as having left HIV care (i.e., LTFU). Patients moving out of the catchment area are categorized as ‘out-migrants.’ Where possible, database and chart reviews were conducted for out-migrants to determine if they had accessed HIV care while away (i.e., maintained continuity of care). Medical record requests made by other care centers were also examined. This was not done for patients that reported staying in southern Alberta as SAC is the sole care provider of the region, the patient accessing HIV care would have to reengage at the clinic.
Simple descriptive (i.e., median, interquartile ranges) and statistical analysis were used to describe the comparative populations with univariate analysis (i.e., chi-square testing) using appropriate p<0.05 as the level of significance.
Results
Between January 1, 2001 and January 1, 2014, 2380 patients accessed HIV care at SAC and were included in the study population. Of these, 1258 (53%) were retained in care, 752 (32%) left care and did not return, and 370 (15%) left and returned to SAC as shown in Table 1. 68% of all patients who left SAC (i.e., 763/1122) were listed as ‘moved’ and 32% (i.e., 359/1122) as ‘LTFU’. Compared to retained patients, patients who permanently left care (category 2) were younger (≤30 years), Caucasian, have an education level of <12 years, and were more likely to have IDU (intravenous drug use) as their most likely HIV risk factor (all p<0.05). Returning patients (category 3) had a similar demographic profile to patients who left permanently being younger (≤30 years), Caucasian, IDU, and more likely to be born in Canada in comparison to retained patients (all p<0.05). Median initial CD4 counts were highest for patients who returned (407/mm3) compared to patients who did not return (375/mm3). The initial CD4 count who were continuously retained in care was 300/mm3 (p<0.0001). 89% of retained patients had a suppressed viral load compared to 64% of patients who left and did not return; only 29% of returning patients had a suppressed viral load at their first visit to SAC after an absence of >12 months (p<0.001).
Patients who were continuously retained in care for the duration of the study period.
Patients who left care at SAC and did not return.
Patients who left care at SAC and returned.
Age as of start at SAC.
MSM, males having sex with males; MSW, males having sex with females; IDU, intravenous drug use.
Suppressed = <500 copies per milliliter. For retained patients the measurement was taken closest to end of study date, for patient who moved the measurement was taken closest to moved date. For returning patients the measurement was taken at first regular visit when returning to SAC.
Returning patients
Between October 1, 2012 and January 1, 2015, 107 patients returned to SAC (category 3); of these, 79 (81%) were interviewed. Interviewed returning patients were similar to non-interviewed patients in median age at initiating care at SAC (32 vs. 34 years), being male (79% vs. 66%), Caucasian (54% vs. 66%), Canadian born (75% vs. 83%), and had an education level of <12 years (36% vs. 41%) (all p=ns). Non-interviewed patients were more likely to have IDU as their HIV risk factor (20% vs. 38%; p<0.05) [Data not shown]. Thirty-three (42%) of respondents stated they had remained living in southern Alberta after leaving HIV care (i.e., ‘LTFU”), 13 (16%) had moved to northern Alberta, 28 (35%) to another province in Canada, 4 (5%) moved out of Canada, and 1 patient moved both out of the province and then out of Canada as shown in Table 2.
Surveys were administered to patients previously followed at the Southern Alberta Clinic (SAC) upon on their first visit back in care after an absence of >12 months (N=79).
Some percentages may not add up to exactly 100 due to rounding.
Responses for patients who left HIV care but remained living locally (LTFU)
Responses provided by patients leaving care locally are listed in Table 2. The most common response was ‘felt well and didn't need treatment’ or ‘loss of interest,’ which accounted for 43% of all responses. Five patients noted that they were ‘not ready to deal with the diagnosis.’ Structural or functional reasons (i.e., transportation constraints, employment issues etc.) accounted for 17% of all responses.
Twelve (36%) of these patients stated they had experienced an illness of some type, and seventeen (52%) had accessed non HIV medical care when disengaged from SAC, although the exact illness or reason for accessing care was not reported. Of patients seeking medical care, 7 visited a family physician, 6 were hospitalized or accessed an emergency department, 2 a walk-in clinic (where minor acute events are managed outside any continuity of medical care), and 2 did not report where they accessed care.
Responses of patients who out-migrated/moved
Forty six patients (58%) stated during their interview that they had moved (i.e., out-migrated) out of southern Alberta; 13 to northern Alberta, 28 to another province or territory in Canada, and 5 moved to another country (Table 2). Twenty-six (57%) patients planned their move while 15 (33%) reported that the move was spontaneous. For 5 patients it was unclear if their move was planned or not. Most patients who moved did so for either functional or personal (i.e., intrinsic) reasons (e.g., new employment opportunities, attending college or university, to be closer friends or family). A majority (70%) of patients who moved stated that they connected with either a HIV or medical care center while away from SAC. Of the patients who moved out of country, 4 out of 5 reported connecting to care. Although the majority of patients stated they accessed medical care while away, detailed records for their HIV care while at SAC were requested for only 16 (55%) of the 29 patients. Half (50%) of patients connecting with care after leaving SAC reported that accessing HIV care in the new region was ‘easy’ and relatively seamless. In only 27% of cases patients stated that SAC helped provide information to facilitate the connection.
When the patient's self-reported responses were compared with the patients listed status in the SAC administrative database, 26 of the 44 (59%) returning patients who stated they moved were listed as ‘moved’; 18 (41%) were listed as ‘LTFU,’ indicating that they did not formally inform SAC of their intent to move outside the region. Two patients listed as ‘moved’ reported staying in southern Alberta.
Reengaging to care at SAC
For patients who had moved away and returned, the reasons why they return to southern Alberta and the length of time they spent in the area before access HIV care at SAC are listed in Table 3. Employment opportunities, family or relationship issues, and a desire to return to the area predominated in reasons for returning to the Calgary area. Reengagement in HIV care within 2 weeks of their return occurred for 43% of patients, whereas 28% delayed accessing care for over 9 weeks.
Surveys were administered to patients previously followed at the Southern Alberta Clinic (SAC) upon on their first visit back in care after an absence of >12 months.
Multiple responses for each patient may be listed.
Life circumstance include situations not immediately related to HIV disease such as employment, moving for family, or simply that they returned to Southern Alberta with no further explanation given.
The majority of the reasons for reengaging in care at SAC, regardless if the patient had moved or were LTFU, centered on health concerns either directly (e.g., returning HIV illness, required HIV medication, abnormal test results) or indirectly (e.g., rethought health situation, decided to be responsible for own health, referred by a doctor, surgeon, or community agency) as shown in Table 3. ‘Life’ circumstances such as employment or family issues that lead to their return to southern Alberta in general also overlapped with their concern to continue or access HIV care at SAC.
Discussion
Between 2001 and 2014 almost half (47%) of all patients followed at the regional Southern Alberta Clinic (SAC) left care either permanently or for an absence of greater than one year before returning. Over two-thirds (68%) moved out of the region, whereas a third (32%) were lost to follow-up. Two-thirds (67%) of patients who left did not return. Patients who left were more likely younger in age, Caucasian, and have less than 12 years of education.
We found that the motivations and underlying reasons for patients who move are different than those for patients who are LTFU. Patients who move out of the region mostly do so for prosaic or pragmatic reasons such as education or employment opportunities, being closer to family or friends, or wanting a change in lifestyle. In contrast, patients who drop out of HIV care (i.e., LTFU) disengage for a wider variety of stated reasons ranging from financial, to structural, to personal. Pragmatic factors do play a role, however, we found that they are not the major determinants for disengagement in contrast to what other studies reported. 23
Over half of the responses in our study focused on self-perception of good rather than poor health as an explanation for not engaging in care. Similar to HIV care centers in New York City, 24 “feeling well” was a substantial reason behind becoming LTFU. Stigma and discrimination continue to be of importance, 25 as expressed by some of our returning patients. An HIV diagnosis can be overwhelming at any stage in the disease leading to withdrawal or denial of the condition.
Retaining patients has become an ongoing concern for most, if not all, HIV care centers. Patients who leave and drop out of HIV care (i.e., LTFU) experience more morbidity and higher mortality rates than those remaining in care. 2,4,12,25,26 In addition, moving between HIV care centers can negatively affect health. 21 Given higher levels of patient mobility, continuity of care between HIV care centers has become increasingly paramount. As the benefits for modern HIV treatment are only achieved by continuous medical care and adherence to antiretroviral therapy, any significant number of patients disconnecting from care are of concern. Continuity of care issues have generally been framed as pertaining to continuous disease management for patients within a region or a specific HIV care center population. Less attention was focused on patients who migrate or move out of the area.
We found that 57% of returning patients who had moved away had planned their move prior to leaving SAC. These patients knew the location of their destination beforehand and thus could plan, with assistance, on where they should go to access HIV care in the local region. Other patients stated they spontaneously moved. The challenges of successfully engaging to care elsewhere, however, are similar whether the patient's move was spontaneous or planned. Under Canada's universal health care program, accessing HIV care should be relatively straightforward with reduced barriers to the continuation of care due to financial or eligibility issues. Despite this, we found that only 60% of returning patients had accessed any medical care and fewer accessed HIV care while away, albeit some may have been generally asymptomatic and not needed care. In addition, nearly half of patients who moved had not told the clinic that that they were moving. This represents a ‘missed opportunity’ to ensure that procedures are in place for seamless continuity of care, for example by providing the patient with a list of HIV care centers in the region or setting up appointments prior to moving. Krentz et al. 21 found that maintaining continuity is important as moving between regions often leads to a delay or absence of accessing HIV care in the new location contributing to a decline in HIV health due to an interruption in care. Patients who are contemplating moving out of the region should ideally inform their HIV care center of their plans to facilitate seamless transfer of HIV care to the new location. Posters or brochures in the waiting room or routine questioning may help address this issue.
Disengaged or LTFU patients are more problematic. These patients' stated functional reasons for leaving care such as transportation constraints or that they were ‘working too much’ to attend, however, for most of disengaged patient's intrinsic or personal reasons were more often used. Functional issues, if they had been expressed prior to the patient disengaging from care, may have been more easily accommodated and addressed whereas Intrinsic reasons are more difficult to address, especially if “feeling well” is the reason behind becoming LTFU. Recommendations for HIV disease management includes laboratory and clinic visits every 3–4 months and maintaining ART even at higher CD4 counts. 11 While CD4 counts prior to disengagement were relatively high, they were at levels that ARV treatment is recommended. 11
Disengagement from care at this stage can lead to poorer health outcomes. Greater efforts should be made by HIV health care teams to emphasis ongoing continuous disease management despite patient's perspectives of ‘good health.’ For patients who are stable with higher CD4 counts and managed disease parameters, less monitoring with fewer routine clinic visits may be a compromise approach in order to retain the patient in long term care. Gardner et al. 27 have recently reported that enhanced personal contact between patients and their HIV health care team improves retention in care regardless of the patient's health status.
The most commonly reported reasons for returning to care centered either directly or indirectly on health care issues. In many cases, an illnesses or contact with a variety of health care providers prompted patients to reconnect to HIV care. In other responses, patients stated that they had rethought their HIV situation either through personal deliberations or through social pressures from family, partners, friends, or various agencies with which they were in contact. Patient responses show a variety of situations that allowed patients to reconnect through care through their access of healthcare, community resources, and family/partner support. Although studies suggest having the clinic contact patients is a key strategy for retaining patients after a gap 28 our data suggest that external sources such as other medical care providers and family/partners also provide a substantial support system for returning patients to care.
Our study has limitations, including that our population at SAC, like all populations, is unique and may differ from other populations due to social, economic, and cultural factors of our local population. We interviewed only a sample of all returning patients. Reasons cited for leaving and returning to care are influenced by a wide variety of factors and may be different in our region compared to others. As we were asking the reasons for leaving a year or more after the event there could be recall bias. Our population and care delivery model may differ from other HIV programs. Although we managed to survey only half of the eligible patients, their clinical and demographic characteristics are very similar to those not interviewed. While we only surveyed those who had returned to care after an absence, their characteristics are again very similar to those who still remain lost to follow up. However, as sole provider for HIV care for southern Alberta, our cohort does allow us to monitor directly our populations HIV care access that can be difficult to observe, and additionally allows us to question patients directly for their reasons behind their decisions.
Conclusions
A deeper understanding of the motivations and reasons described by the patients themselves should help formulate innovations in care delivery that are needed to avoid the negative effects resulting from disconnecting from HIV care, and then to develop programs to reconnect with those who have disengaged form care. This patient-based perspective will contribute to implementing changes that encourage retention and ensure all those providing health care to patients recognize the challenges in facilitating reconnection programs. While maintenance of any individual's health is a joint responsibility between caregivers and those living with HIV, program adjustments may be needed to help this population benefit from the recent major advances in HIV therapy that can return them to a next to normal life expectancy.
Footnotes
Acknowledgments
We wish to thank the nurses and social workers at SAC for conducting the interviews with returning patients. We thank Heather Worthington for her previous work on this issue. We thank Natasha Hoehn for updating the data. And we thank the patients themselves for their input and insights.
Author Disclosure Statement
No conflicting financial interests exist.
