31
views
0
recommends
+1 Recommend
0 collections
    0
    shares
      • Record: found
      • Abstract: found
      • Article: found
      Is Open Access

      Retention and viral suppression in a cohort of HIV patients on antiretroviral therapy in Zambia: Regionally representative estimates using a multistage-sampling-based approach

      research-article

      Read this article at

      Bookmark
          There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.

          Abstract

          Background

          Although the success of HIV treatment programs depends on retention and viral suppression, routine program monitoring of these outcomes may be incomplete. We used data from the national electronic medical record (EMR) system in Zambia to enumerate a large and regionally representative cohort of patients on treatment. We traced a random sample with unknown outcomes (lost to follow-up) to document true care status and HIV RNA levels.

          Methods and findings

          On 31 July 2015, we selected facilities from 4 provinces in 12 joint strata defined by facility type and province with probability proportional to size. In each facility, we enumerated adults with at least 1 clinical encounter after treatment initiation in the previous 24 months. From this cohort, we identified lost-to-follow-up patients (defined as 90 or more days late for their last appointment), selected a random sample, and intensively reviewed their records and traced them via phone calls and in-person visits in the community. In 1 of 4 provinces, we also collected dried blood spots (DBSs) for plasma HIV RNA testing. We used inverse probability weights to incorporate sampling outcomes into Aalen–Johansen and Cox proportional hazards regression to estimate retention and viremia. We used a bias analysis approach to correct for the known inaccuracy of plasma HIV RNA levels obtained from DBSs. From a total of 64 facilities with 165,464 adults on ART, we selected 32 facilities with 104,966 patients, of whom 17,602 (17%) were lost to follow-up: Those lost to follow-up had median age 36 years, 60% were female ( N = 11,241), they had median enrollment CD4 count of 220 cells/μl, and 38% had WHO stage 1 clinical disease ( N = 10,690). We traced 2,892 (16%) and found updated outcomes for 2,163 (75%): 412 (19%) had died, 836 (39%) were alive and in care at their original clinic, 457 (21%) had transferred to a new clinic, 255 (12%) were alive and out of care, and 203 (9%) were alive but we were unable to determine care status. Estimates using data from the EMR only suggested that 42.7% (95% CI 38.0%–47.1%) of new ART starters and 72.3% (95% CI 71.8%–73.0%) of all ART users were retained at 2 years. After incorporating updated data through tracing, we found that 77.3% (95% CI 70.5%–84.0%) of new initiates and 91.2% (95% CI 90.5%–91.8%) of all ART users were retained (at original clinic or transferred), indicating that routine program data underestimated retention in care markedly. In Lusaka Province, HIV RNA levels greater than or equal to 1,000 copies/ml were present in 18.1% (95% CI 14.0%–22.3%) of patients in care, 71.3% (95% CI 58.2%–84.4%) of lost patients, and 24.7% (95% CI 21.0%–29.3%). The main study limitations were imperfect response rates and the use of self-reported care status.

          Conclusions

          In this region of Zambia, routine program data underestimated retention, and the point prevalence of unsuppressed HIV RNA was high when lost patients were accounted for. Viremia was prevalent among patients who unofficially transferred: Sustained engagement remains a challenge among HIV patients in Zambia, and targeted sampling is an effective strategy to identify such gaps in the care cascade and monitor programmatic progress.

          Abstract

          Izukanji Sikazwe and co-workers report on the use of routine program data to estimate retention of patients in HIV care in Zambia.

          Author summary

          Why was this study done?
          • Retention and HIV RNA suppression in HIV treatment programs represent critical metrics of success, but regionally representative estimates in longitudinal cohorts remain uncommon.

          • Most treatment programs, whether at the national or sub-national level, lack data systems able to capture patient movement across facilities, which may lead to underestimates of retention.

          • HIV RNA suppression levels from routine program monitoring or large-scale cross-sectional studies may miss patients who are lost to follow-up, and therefore those who had been on treatment, thus underestimating the prevalence of viremia.

          • Intensive ascertainment of care status and HIV RNA levels in a numerically small but randomly selected sample of patients with unknown outcomes can improve our understanding of treatment success in real-world program settings.

          What did the researchers do and find?
          • We used a multistage sampling approach, in which we first selected facilities and then, within each facility, selected a random sample of patients who were lost to follow-up—defined as no contact with a health facility for 90 or more days after last their missed appointment—for intensive tracing. We also collected dried blood spots in Lusaka Province to determine viral load levels in both a sample of lost patients and in-care patients to estimate the prevalence of viremia in both populations.

          • We found that among 165,464 patients on treatment in 64 facilities, 28,111 (17%) were lost to follow-up. We traced 2,892 of the lost (16%): and found 412 (14%) had died and 1,751 (61%) remained alive. Of those alive, 1,293 (74%) continued to receive treatment, 255 (15%) had stopped, and care status could not be determined in 12%.

          • Among all ART patients, using data known to the program before tracing, retention was 67.7% at 2 years; after incorporating findings among the lost patients, retention was 91.2%.

          • Among 1,044 participants with a viral load determination (901 in care and 143 who were lost), viremia was present in 18.1% of those in care, 71.3% of those lost to follow-up (49.8% of those lost and in care elsewhere and 83.9% of those lost and not in care), and 24.8% overall.

          What do these findings mean?
          • We found that patient retention in public ART facilities in Zambia was higher than apparent in data collected during routine care and monitoring.

          • Estimates of viremia that do not account for elevated levels in patients who stop treatment (and are lost to follow-up from cohort studies) or are missing from cross-sectional studies may overestimate treatment success.

          • Viremia among patients lost from one facility who reported engagement in a new facility was markedly higher than among patients who remained engaged in their original facility: Even though durable discontinuation from care was relatively infrequent, strategies to consistently engage patients to enhance retention and viral suppression are urgently needed.

          Related collections

          Most cited references18

          • Record: found
          • Abstract: found
          • Article: not found

          Understanding reasons for and outcomes of patients lost to follow-up in antiretroviral therapy programs in Africa through a sampling-based approach.

          Losses to follow-up after initiation of antiretroviral therapy (ART) are common in Africa and are a considerable obstacle to understanding the effectiveness of nascent treatment programs. We sought to characterize, through a sampling-based approach, reasons for and outcomes of patients who become lost to follow-up. Cohort study. We searched for and interviewed a representative sample of lost patients or close informants in the community to determine reasons for and outcomes among lost patients. Three thousand six hundred twenty-eight HIV-infected adults initiated ART between January 1, 2004 and September 30, 2007 in Mbarara, Uganda. Eight hundred twenty-nine became lost to follow-up (cumulative incidence at 1, 2, and 3 years of 16%, 30%, and 39%). We sought a representative sample of 128 lost patients in the community and ascertained vital status in 111 (87%). Top reasons for loss included lack of transportation or money and work/child care responsibilities. Among the 111 lost patients who had their vital status ascertained through tracking, 32 deaths occurred (cumulative 1-year incidence 36%); mortality was highest shortly after the last clinic visit. Lower pre-ART CD4 T-cell count, older age, low blood pressure, and a central nervous system syndrome at the last clinic visit predicted deaths. Of patients directly interviewed, 83% were in care at another clinic and 71% were still using ART. Sociostructural factors are the primary reasons for loss to follow-up. Outcomes among the lost are heterogeneous: both deaths and transfers to other clinics were common. Tracking a sample of lost patients is an efficient means for programs to understand site-specific reasons for and outcomes among patients lost to follow-up.
            Bookmark
            • Record: found
            • Abstract: found
            • Article: found
            Is Open Access

            Toward an Understanding of Disengagement from HIV Treatment and Care in Sub-Saharan Africa: A Qualitative Study

            Introduction The rollout of antiretroviral therapy (ART) in sub-Saharan Africa has brought lifesaving treatment to millions of HIV-infected individuals. To continue to benefit from therapy, however, patients must remain in care. Ensuring long-term retention in care and treatment for HIV/AIDS has proven challenging in resource-scarce settings [1]–[5]. Tracking studies in which patients lost to follow-up are sought in the community to ascertain outcomes suggest that 20%–80% of patients “lost” but alive are no longer in care [6],[7]. Previous research by Geng et al. [8] using tracking data to estimate outcomes for a large clinic population indicated that approximately one in six patients taking ART were not in care after 2 y. Understanding disengagement from care is essential to improving retention and, thus, long-term outcomes of treatment. The existing literature on barriers to ART adherence sheds considerable light on the retention problem. Since adherence means not only following dosing regimens but also being able to refill prescriptions, and since prescriptions are refilled as part of routine follow-up visits in Africa, barriers to adherence and retention overlap. Travel distance to clinic sites and associated costs, stigma and fear of disclosure, competing demands for scarce resources, religious and cultural beliefs, and unanticipated obligations and events (e.g., attending a family funeral) are key adherence barriers identified through previous research that also bear upon retention [9]–[14]. Motivation stemming from improved health following ART initiation, material and emotional support from others, and the promise of increased longevity are overlapping facilitators [15],[16]. As retention research develops, a number of patterns are emerging to suggest factors shaping disengagement. Disengagement rates appear particularly high for patients who have not yet initiated ART [17]–[23], and lower in decentralized care sites [24]–[27]. There is some evidence that younger patients, men, pregnant women, and individuals who have not disclosed their HIV status disappear from care more frequently [23],[28]–[32]. A wide variety of contributors to missed visits have been cited in patients' own accounts. Patient-reported barriers include travel distance to clinic, and associated time and expense; traveling/being away from home on the visit date; fear of disclosure; stigma; dissatisfaction with care; improved health; discouragement and the desire to “give up”; “return to normal life”; and a relatively low perception of risk associated with HIV [33]–[40]. Psychological facilitators have also been suggested, among them motivation, high perceived risk associated with HIV, and a sense of self-efficacy (feeling capable of meeting treatment requirements) [35],[41]. The number of studies with data on reasons for missed visits collected from patients has grown rapidly in recent years. In most cases, these data are reported simply as lists of reasons patient participants have provided, stopping short of deeper analysis. For a more integrated, interpretive approach, we may look to the “meta-ethnography” by Merten et al. [40], which reviewed existing qualitative studies and integrated data to propose an explanatory “line of argument”. Drawing inductively upon results from 31 primary studies, the authors highlighted the importance of social processes in mediating ART adherence and retention in HIV care in Africa. Patients' “social integrity” and “social careers”—both of which refer to negotiation of social relationships in the context of ART treatment—were offered as concepts to clarify the social processes involved. The goals of our research are also explanatory. Our conceptual starting point is a social contextual explanation of ART adherence in Africa centering on patients' sense of social responsibility as a motivating factor. This sense of responsibility is seen as a reciprocal response to material and emotional help from family, treatment supporters, health care providers, and others without which continued adherence to ART and to clinic follow-up appointments would not be possible. As recipients of ongoing adherence help, individuals taking ART feel a responsibility to helpers to succeed at therapy. Success thus becomes both a social responsibility and a means of ensuring help continues to be available into the future [42]. This qualitative, patient-centered research aimed to help explain missed clinic visits and subsequent disengagement from HIV/AIDS treatment and care in sub-Saharan Africa. The study took place in three African countries—Nigeria, Tanzania, and Uganda—and had two objectives. First, we set out to inductively identify and characterize in depth reasons for missed visits from the perspectives of patients. Second, we worked to assemble identified reasons into a broader explanation of missed visits and disengagement from care. Methods Country Settings and Clinical Study Sites Tanzania, Uganda, and Nigeria represent diverse geographic and cultural settings. However, all three countries have generalized HIV epidemics in which women are disproportionately affected [43]. Characteristics of the epidemics vary across countries, but all three have seen prevalence rates drop with global scale-up of free ART. Huge health gains have resulted from the scale-up effort, yet more than half of eligible adults remain without access to therapy. Recent estimates place the number of adults living with HIV/AIDS at 1–1.5 million in Tanzania and Uganda, and at 3.3 million in Nigeria (see Table 1). The difference in numbers reflects population differences, at least in part. At approximately 160 million, Nigeria's population is the largest of all African countries. The number of adults living with HIV/AIDS in Nigeria is reported to be the third highest in the world [44]. 10.1371/journal.pmed.1001369.t001 Table 1 Characteristics of country settings [63]–[74]. Characteristic Country Nigeria Uganda Tanzania Population 158,423,000 (2010) 33,425,000 (2010) 44,841,000 (2010) HIV prevalence before ART scale-up 4.5% (1998) 8.3% (1999) 8.0% (1998) Year free ART became available 2006 2004 2004 HIV prevalence after ART scale-up 3.6% [3.3%–4%] (2009) 6.5% [5.9%–6.9%] (2009) 5.6% [5.3%–6.1%] (2009) Number of adults on ART 359,200 (2010) 248,200 (2010) 258,100 (2010) Percent eligible receiving ART 31.0% (2009) 47.0% (2011) 50.0% (2010) Number of adults living with HIV 3.3 million [2.9–3.6 million] (2009) 1.2 million [1.1–1.3 million] (2009) 1.4 million [1.3–1.5 million] (2009) 95% CIs given in brackets; year given in parentheses. Participating clinical study sites were the Jos University Teaching Hospital (JUTH) AIDS Prevention Initiative in Nigeria HIV/AIDS Clinic (APIN Clinic) in Jos, Nigeria; the Mwananyamala Hospital HIV/AIDS Care and Treatment Center in Dar es Salaam, Tanzania; and the Mbarara Regional Referral Hospital Immune Suppression Syndrome Clinic (ISS Clinic) in Mbarara, Uganda. All three are large clinics providing comprehensive treatment, care, and support services for patients with HIV/AIDS. Physicians, nurses, counselors, and pharmacists provide services to patients, supported by technical, administrative, and ancillary staff. The total number of direct care staff ranges widely across the sites, from fewer than 30 to more than 70 (full- and part-time). The JUTH APIN Clinic serves the city of Jos, with a population of approximately 1.5 million, and the surrounding central plateau region of Nigeria. Mwananyamala Hospital HIV/AIDS Care and Treatment Center serves the Kinondoni Municipality of Dar es Salaam, Tanzania's largest city, numbering about 4 million people. The ISS Clinic serves the Mbarara District of southwest Uganda and parts of neighboring districts (approximately 3 million people). Additional information about participating clinical study sites appears in Table 2. 10.1371/journal.pmed.1001369.t002 Table 2 Characteristics of participating study sites. Characteristic APIN Clinic (Jos, Nigeria) Mwananyamala Hospital HIV/AIDS Care and Treatment Center (Dar es Salaam, Tanzania) ISS Clinic (Mbarara, Uganda) Geographic setting Urban Urban Peri-urban and rural Size of population served 22 million 4 million 3 million Year opened 2002 2004 1998 Total adults enrolled in HIV/AIDS care 17,139 16,107 21,149 Total adults currently followed 10,532 5,478 8,808 Adults currently followed on ART 8,854 3,930 7,140 Patient Tracking for Research and Clinical Care With the identification of loss to follow-up as a threat to the long-term success of ART scale-up in Africa, patient tracking has been increasingly relied upon by researchers as a means of obtaining information on patients who have missed clinic visits [7],[8],[37],[38]. At the same time, local treatment program planners and health care practitioners have independently developed patient tracking as part of HIV clinical care. For clinical purposes, tracking is used to encourage retention and to contact patients who need to be seen outside of regular appointment schedules. Clinical trackers are trained health care workers or volunteers. Permission for tracking is requested from patients at enrollment in care. In-person patient tracking is a culturally meaningful clinical strategy for making contact with patients in the absence of highly developed telecommunications systems. As mobile phones become more widely available, telephone tracking is replacing the in-person approach. Clinical trackers travel outside clinics to locate patients in the community. From lists of patients to be tracked, trackers organize itineraries for in-person tracking and lists of individuals to be followed up by telephone, then attempt to make contact. The tracking programs at the three clinical sites participating in this study differed in size, mode of transport, reliance on phone versus in-person tracking, and distance traveled to locate patients. Differences reflected distinctions in clinic policy and/or local practice. Trackers at all three sites were paid and received training in HIV treatment, ethical practice, and tracking procedures. Sampling and Recruitment The sample for this study was generated using clinic tracking lists. The lists identified adult patients aged 18 y and older who were (1) enrolled in care, (2) had missed a regularly scheduled follow-up visit, and (3) had not subsequently returned to the clinic for 3 mo or more. A 3-mo period of absence was chosen following the practices of participating clinics for identifying patients to be tracked. Lists of persons fulfilling these criteria were generated by data managers at the sites from clinic databases and forwarded to clinic trackers for follow-up. When an individual was contacted through clinic tracking, and after standard clinic tracking procedures had been completed, trackers briefly introduced the research using an institutional-review-board-approved script, and requested permission for follow-up by study research assistants. Individuals giving permission were then recontacted by research assistants, who described the study in detail, answered questions, and enrolled those who expressed interest in participating. Thus, individuals participating in the study met the following inclusion criteria: (1) were absent from the clinic for 3 mo or more, (2) were tracked and contacted by clinic trackers, (3) gave permission for additional follow-up by study research assistants, (4) were successfully recontacted by study research assistants, and (5) were able and willing to provide informed consent. Ethics This study was approved by the Harvard Medical School Committee on Human Studies, Boston, Massachusetts; the JUTH Institutional Health Ethical Research Committee, Jos, Nigeria; the Muhimbili University of Health and Allied Sciences Senate Research and Publications Committee, Dar es Salaam, Tanzania; the Mbarara University of Science and Technology Institutional Review Committee, Mbarara, Uganda; and the Uganda National Council on Science and Technology, Kampala, Uganda. All study participants provided written informed consent. Compensation in the form of cash and/or reimbursement for travel to interview locations was provided. Amounts and forms of compensation were determined in consultation with investigators and ethical review boards at participating sites. Data Collection Data were collected from 15 January 2010 through 30 March 2012 using in-depth in-person interviews with enrolled patient participants. Consistent with an inductive approach, interviews were designed to be flexible, following a general, topic-oriented structure. Topics were selected to address the goals of the research and included the following: (1) experiences of care at the clinic, (2) experiences of tracking, and (3) circumstances of missed appointments. Interviews sought to elicit detailed accounts of actual experiences of interviewees from their points of view. They were conducted by trained research assistants in each of the three countries in local languages, and were audio-recorded with permission. They took place in private locations—at patients' homes or at other convenient places of their choosing—and lasted approximately one hour. Data Preparation Upon completion of each interview, interviewers produced a complete transcript in English from local language audio-recordings. Each transcript was reviewed for quality by M. A. W. Interviewers made additions and corrections to transcripts as indicated by the quality review. The transcripts constituted the study data. Data Analysis Analysis of data aimed to characterize patients' reasons for missing clinic visits and to represent them as descriptive categories. An inductive approach to concept development centering on category construction and informed by grounded theory methodology [45],[46] was used to carry out the analysis. Analysis began with repeated review of interview transcripts to identify sections of text illuminating reasons for missing clinic visits. These sections of text were displayed in matrices to reduce the data and facilitate identification of content similarities or patterns. Sections of text determined to be similar in content were grouped and assigned provisional labels to form an initial set of “reason categories.” The initial category set was then reviewed to confirm that labels accurately reflected corresponding sections of text. Labels were revised as necessary to strengthen correspondences and improve precision. Illustrative quotes were retrieved from interview transcripts. Multiple authors participated in this process. Disagreements and inconsistencies arising in the analytic process were resolved through discussion. Data from the three sites were analyzed separately. Once the categories were formulated, they were examined interpretively for broader underlying dimensions and relationships to each other. This interpretive analysis allowed us to move beyond a listing of individual reasons for missing clinic appointments toward a larger, more integrated explanation, and to highlight previously underemphasized aspects of the problem. Categories were then further grouped to represent “unintentional” versus “intentional” reasons for missing appointments and were loosely arranged in time sequence. Of course, other interpretations are possible. Our goal was to advance thinking and research on disengagement from HIV care in sub-Saharan Africa by proposing new conceptualizations suggested by qualitative data. Results Outcomes of Tracking Eight-hundred-ninety patients were tracked at the three sites as part of recruitment. Two-hundred-eighty-seven were located, and 91 ultimately took part in the study (see Table 3). Of the 91 participants, 76 were being prescribed ART; 15 had not initiated treatment. Length of time out of care varied widely across the sample of participants. Reasons for not participating in the study among located patients included the following: (1) refusal to give permission for follow-up contact for research, (2) denial of HIV-positive status to trackers, (3) fear of disclosure of HIV status as a result of research participation, and (4) preference for remaining uninvolved in any further HIV-focused activity (treatment or research). Of 603 patients tracked but not located, 211 (35%) were reported dead, 144 (24%) had moved, and 79 (13%) were traveling away from home at the time of tracking visits. No information could be obtained for the remainder. 10.1371/journal.pmed.1001369.t003 Table 3 Study tracking activities and outcomes. Site Number of Trackers Participating Tracking Period for Study Recruitment Number of Patients Tracked Number of Patients Located (Percent) Number of Patients Enrolled Jos, Nigeria 3 18 mo 254 140 (55%) 40 Dar es Salaam, Tanzania 19 6 mo 208 46 (22%) 20 Mbarara, Uganda 2 17 mo 428 101 (24%) 31 Of the 140 people located in Jos, 17 (12%) were tracked by home visit only (no phone). In Mbarara and Dar es Salaam, the large majority of people were tracked by home visit only. Characteristics of Interviewees The average age of patient interviewees was 36 years. Almost 60% were women; 62% were Christian. On average, they had a little less than 10 y of education. Three-quarters of interviewees reported being employed. Median reported travel time to clinic was about 45 min. Nigerian participants had more years of schooling than Ugandan or Tanzanian participants, and were more likely to be employed than Tanzanian participants. Travel time to clinic was longest in Uganda. Characteristics of patient interviewees are detailed in Table 4. 10.1371/journal.pmed.1001369.t004 Table 4 Patient participant interviewee characteristics. Characteristic All (n = 91) Nigeria (n = 40) Tanzania (n = 20) Uganda (n = 31) Gender female (percent) 59.3 62.5 55.0 58.1 Age (years), mean (SD) 35.9 (8.1) 34.9 (7.4) 39.3 (9.0) 35.0 (8.1) Religion (percent) Christian 61.5 52.5 50.0 80.1 Muslim 38.5 47.5 50.0 19.4 Education (years), mean (SD) 9.8 (3.9) 11.9 (3.7) 9.1 (2.8) 7.6 (3.6) Employment (percent) Employed 75.8 85.0 55.0 77.4 Unemployed 24.2 15.0 45.0 22.6 Travel time to clinic (minutes), median (IQR) 45 (30–120) 30 (30–60) 30 (30–52.5) 120 (60–180) IQR, interquartile range; SD, standard deviation. Reasons for Missing Visits Core terms used in the discourse on retention in HIV treatment and care reflect the evolution of research and thinking on the topic, while pointing to one or another potential source of retention problems. “Loss to follow-up” connotes clinics' difficulties in keeping track of patients, while patient-centered terms—the currently preferred “disengagement” or the African term “defaulter”—imply that missed visits result from patient choice. In contrast, it was the unintentional origins of missed visits that stood out among our study participants. Interviewees continually confronted competing demands on their time. When demands stemmed from cultural and family obligations, or economic requirements—e.g., caring for a sick family member in a distant location, traveling for work, attending a relative's funeral in another town—they took precedence over keeping clinic appointments. The following interview excerpt illustrates this: I went to the village in December and when it was time to come back before my appointment of January 3, 2011, I was not able to come back because I lost a brother. A few days after losing my brother, I lost another relative and so I stayed in the village. I had planned to come back on January 1, since my clinic appointment was for January 3, but I did not come back. [Female, age 27] Plans were routinely upended by unexpected events, another source of unintentional absences. Accidents, vehicle breakdowns, and other travel delays meant that individuals who had traveled but planned to return before their clinic visit date were stranded away from home, as in the following case: What caused me not to come to the clinic was that I lost my father. When he died, I went to [name of town] for the burial and the money that I had taken with me ran out. And so I had to first stay there to make some more to facilitate my return. When I was able to return to my home, I failed to get the money for transport to the hospital and so I started working to be able to earn the amount enough to facilitate my transport fare. [Male, age 40] Encounters with violence were obstacles for some patients. Lack of support from family and community in the form of failure to provide transport funds or of active opposition to care led to unintentional absences for some interviewees. Errors—misunderstanding visit dates or forgetting an appointment—were another unintentional reason for missing. Some missed visits were intentional. For example, patients might decide to stop attending a particular clinic as decentralization initiatives provided the option of receiving care closer to home. Patients offered an alternative to long, expensive travel for care transferred to local facilities. If transfers were not recorded at the initial care sites, those patients were categorized as “missing.” When patients decided to stop keeping clinic appointments, the reason could also be dissatisfaction with care. Interviewees reported objections to clinic policy (e.g., insistence on adherence to certain days and times of appointments) or some aspect of care organization (e.g., clinic schedules that made for long waiting times). Interviewees also complained of harsh treatment by providers. Harsh treatment typically referred to behavior perceived by patients to be rude and/or rejecting. For example, interviewees reported being spoken to “roughly” or feeling that the clinic staff “didn't care.” “Shouting” and “bad language” were cited. At one site, references were made to threats that missed visits would result in being dropped from care. Experiences of harsh treatment left patients feeling hurt, angry, and humiliated, as the following quotes illustrate: I felt humiliated. I felt very bad. After receiving the services I was full of pain. After that incident I didn't go back to the hospital. I decided to leave everything and opt for fruits and food…and until now I am not taking it [ART]. [Male, age 60] Like my last clinic visit, it became too much. They really looked like they didn't care. [Interviewer: Why do you say they looked like they didn't care?] When people come to the clinic and go to their [consulting] rooms, they don't care about them. There are many patient files piled on their desks but they just sit there. Or sometimes, they come, look at the files and then just go their own way. Or sometimes when you enter the doctor's room, they start conversing and talking about their own things while you just sit there and wait for them to finish. [Female, age 27] …the first day I came, I didn't know I had to drop my card—hand card—by the door. So I came in and sat down where my friend said. The nurse there was so harsh that I didn't drop my card. She said all nasty things to me and at a point I said, “Amen! Let me just go.” That was the first day; that was the first experience. I felt it was not a place to be. It was like I should just leave the hospital immediately. [Female, age 35] They [staff] told me, “You are late.” Now, there are problems people face. I don't know how they perceive it but for me this thing is very difficult. Attending clinic every month is very difficult, because you have to leave your work, sometimes report [to work] late—reasons like these. Everyone has problems. They are supposed to solve these problems with love, not harshly like they do. Until people are afraid of their words—abusive words. They behave as if we are there to beg for meds. It's our right to get the meds. [Female, age 34] Examined closely, absences are revealed to be less the simple result of one or another “reason” taken individually, and more the product of complex chains of events. To identify only the initial, “surface” reason is to provide an incomplete, sometimes inaccurate, account. For a full understanding, one must follow the events in the chain. An example is the frequently cited “problem of transport.” Transport problems often gloss a much more complicated set of circumstances. In the following instance, for example, an interviewee who began his explanation of missed visits by citing a “transport problem,” went on to reveal more about what that problem led to and meant: We fail to get vehicles sometimes. And when you go to look for money for [a motorcycle taxi] you find you do not have it. So when you miss your appointment and go to clinic on another day, [the provider] starts quarreling with you about not having come on the appointed day. And when you tell that person you got problems, he tells you, “You should spend the night on the road.” How can I spend the night on the road? Here I am, having failed to get money for taking me to the hospital and then I'm supposed to get money to spend the night somewhere and feed myself? These are some of the problems I have in going to the clinic. [Male, age 56] This patient became discouraged and abandoned care—not so much due to transport difficulties as to the lack of understanding and accommodation of these difficulties by staff. When located for this study, he had not been seen for care for 2 y. In addition to being complex, many obstacles to missed visits are also transitory. They end, dissipate, or cease to be obstacles as circumstances change over time. Recognizing this raises the question, if initial obstacles no longer block clinic attendance, why don't patients who miss visits then return? A strong reluctance to return for care after an absence emerged from the qualitative data. I was scared to come back to the clinic since a lot of time had already passed and I might come back and they chase me away. [Male, age 40] I was scared of coming back and them telling me that they will not accept me because I didn't come when they told me to. I was wondering whether they would accept me or not or whether they would scold me. [Female, age 35] I was afraid to go back because I didn't have my card and I stopped meds for a long time. I was afraid the nurses would yell at me. [Female, age 35] Reluctance to Return Two reasons for this reluctance stand out. The first centers on a sense of shame articulated by interviewees, who felt a strong sense of the responsibility that comes with starting ART. Having gained access to a valuable resource in a resource-scarce environment, and having been extensively “educated” as to the adherence commitment access to that resource entails, patients who miss clinic visits seemed to see themselves as having failed to live up to their responsibilities when they missed visits and experienced a treatment lapse. The following quotes illustrate this: When they accept us and open our files, they tell us this—that when you start, you should not stop. And if you know you will play with it, then do not start. So it was because I know I was wrong. That is why I said I will not be able to return. [Female, age 25] In fact, when [the tracker] called me, I felt a sense of guilt. This is my health. I am supposed to be worrying about my health, not somebody else worrying about my health—you know? [Male, age 46] Apprehension at anticipated negative responses from care providers is a second explanation suggested by the data for reluctance to return. Over time, the distress at perceived poor treatment prompting patients to miss visits evolves into anticipation of the painful encounters they see awaiting them upon return. Interviewees articulated a fear of being “yelled at,” “abused,” and/or “chased” from the clinic should they attempt to resume treatment after an absence. Rather than face this, they simply stayed away. I was afraid to go back because I had stopped meds for a long time and I didn't have my [clinic identity] card. I was afraid the nurses would yell at me…. [Female, age 35] I did not come back on the date I was given. When the date for me to go back to the clinic had passed, I feared I would be abused if I went back past my appointment date. [Female, age 20] I was scared to come back to the clinic since a lot of time had already passed and I might come back and they chase me away. [Female, age 20] The way she told me, “Why did you miss clinic…despite what happened, you should have come to the clinic and met other people.” I told her no, I didn't want to show up because what happened to me [at the clinic] was still in my heart. If I was treated nicely the situation would have been different; since I was treated badly I saw the treatment was meaningless. [Male, age 60] [Interviewer: The situation of stopping care or treatment at the clinic, how did that make you feel?] It made me feel bad to see that I had to go to get meds. Looking at how badly the provider spoke to me, I asked him how they would be benefiting from my death? I said to myself, “Let me leave these things. If I am to die let me do that—die.” [Male, age 56] Reluctance to return, whether originating in shame at having failed to fulfill a responsibility or apprehension about the anticipated negative response of providers, signals the erosion of a subjective sense of connectedness to the idea, processes, and, for some, the specific site of care. We propose it is this sense of connectedness, together with family and community support, that fuels patients' motivation to consistently overcome economic and other obstacles to keeping clinic appointments. The lifelong commitment patients understand themselves to be making in initiating ART, a sense of caring and expectation of success from providers, and solidarity with fellow patients all contribute. The data point to patients' subjective sense of connectedness to care as a significant, and to date underappreciated, antecedent of retention (see Figure 1). 10.1371/journal.pmed.1001369.g001 Figure 1 How missed visits may become disengagement from HIV/AIDS treatment and care in Africa. Discussion This qualitative study reveals the importance of recognizing the unintentional origins of many missed visits, the often hidden complexity of reasons for missing, and the ways in which reasons change over time. A prospective approach to the qualitative data revealed both the transitory nature of some obstacles to clinic attendance and a trajectory whereby initial obstacles develop into reluctance to return. In highlighting these broader dimensions and identifying “reluctance to return” as an analytic construct, our aim is to move away from a narrow focus on individual barriers toward a larger and more integrated explanation. The prominence of reluctance to return in interviewee accounts of absences from care signals a potential caution for providers overseeing initiation of ART. Patient education in clinical settings for ART initiation in Africa has featured stern warnings about the lifelong commitment treatment represents, the meaning and importance of medication adherence, and the dire consequences of lapses. Patients' feelings of shame at missing visits and fear of clinic staff's negative response to absences may indicate just how seriously they have taken these warnings. Educational efforts intended to maximize the benefits of ART for patients may paradoxically be driving some away from care. How shall we understand the patient complaints of harsh treatment by staff seen in accounts of reluctance to return? The quality of relationships between patients and health care providers in poor countries has received relatively little research attention. However, the available literature does clearly indicate that friction between the two groups, and reports of “abuse” by clinical staff, are neither specific to HIV/AIDS care nor limited to the sites and countries represented here [47]–[53]. Analyses shedding light on the origins of friction are scarce, but suggest as contributing factors the overwhelming numbers of patients and the emotional strain of HIV/AIDS care provision [54]–[57], perceived threats to professional identity [47],[52], and conflicting priorities of patients and staff [51]. Qualitative research in medicine and public health intentionally aims for in-depth analysis rather than generalizable results. Nevertheless, single site qualitative studies may reflect limitations in resources more than dictates of research design. This study was carried out at three HIV treatment sites in three sub-Saharan African countries. Results reflect commonalities and contrasts across the three patient participant groups. In all three, visits are missed both unintentionally and by design, and evolve into reluctance to return. The specific forms this pattern takes vary, however. The availability of data from three sites in this study offer the advantage of a broader base for analysis, but do not allow for formal cross-site comparison, as the qualitative samples were not designed to be representative. The recent shift in emphasis from increasing access to HIV treatment to enhancing retention in care has led to a number of suggestions and changes aimed at reducing absences. Some of these are structural, e.g., reorganizations of services to make clinic attendance more convenient and efficient (decentralization, reduced waiting times, reduced visit frequency) [58]. Others feature one or another form of community-based support [59],[60]. Returning patients to care following an absence has received less attention as an intervention objective overall. Yet recent research confirms substantial numbers of lost patients are alive and can be located [7],[8],[38],[61],[62]. This study calls attention to reluctance to return as a retention barrier. It follows that interventions designed to address and resolve reluctance might inspire “missing” patients to return to care [61]. To target return to care (rather than prevention of missed visits) would be to bring a harm reduction approach to the retention problem, and to recognize that, while not optimal, absences will be unavoidable over a lifetime of treatment. A harm reduction approach would seek to reduce barriers to re-engagement. The process through which unintentional and intentional missed visits evolve into a weakened sense of connectedness, reluctance to return, and, ultimately, disengagement from care points to an underlying exchange-based relationship between health care providers and HIV/AIDS patients receiving care and ART. In return for access to lifesaving treatment and care, patients are expected to, and agree to, reciprocate with adherence to both medication and clinic appointments. The commitment entails a moral obligation; missed visits are thus a moral failing. Understanding the moral dimensions of the treatment relationship makes sense of patients' shame, justifies “scolding” by providers, and explains the common usage of the term “defaulter” (i.e., someone who fails to repay a debt) to refer to patients who miss clinic appointments in sub-Saharan Africa. This study has a number of limitations. First, the study is based on a convenience sample of patients who could be located through tracking. Reasons for missed visits among persons who could not be located are not represented. Social desirability bias and recall bias may have also resulted in some reasons for missing visits not appearing in the data. Neither reasons for returning to care following an absence nor differences across the clinical sites is examined. A limitation of this analysis qualitatively is that it reflects only a single perspective: the patient's perspective. In a more comprehensive qualitative examination, multiple perspectives on the retention problem would be represented. Conclusion International scale-up of treatment and care for HIV/AIDS has been a resounding public health success. To realize full benefit from the initiative, high rates of long-term retention are essential. Retention research focusing on Africa has shed considerable light on the dimensions of the problem and on reasons for absences from care as directly reported by patients. This paper offers a broader and more complete explanation of disengagement and a new explanatory construct: reluctance to return. To focus on return is to acknowledge the inevitability of absences over a lifetime course of treatment for HIV/AIDS. Efforts to prevent missed clinic visits complemented by moves to minimize barriers to re-entry into care are more likely than either alone to keep missed visits from turning into long-term disengagement.
              Bookmark
              • Record: found
              • Abstract: found
              • Article: found
              Is Open Access

              Reframing HIV care: putting people at the centre of antiretroviral delivery

              The delivery of HIV care in the initial rapid scale-up of HIV care and treatment was based on existing clinic-based models, which are common in highly resourced settings and largely undifferentiated for individual needs. A new framework for treatment based on variable intensities of care tailored to the specific needs of different groups of individuals across the cascade of care is proposed here. Service intensity is characterised by four delivery components: (i) types of services delivered, (ii) location of service delivery, (iii) provider of health services and (iv) frequency of health services. How these components are developed into a service delivery framework will vary across countries and populations, with the intention being to improve acceptability and care outcomes. The goal of getting more people on treatment before they become ill will necessitate innovative models of delivering both testing and care. As HIV programmes expand treatment eligibility, many people entering care will not be ‘patients’ but healthy, active and productive members of society 1. To take the framework to scale, it will be important to: (i) define which individuals can be served by an alternative delivery framework; (ii) strengthen health systems that support decentralisation, integration and task shifting; (iii) make the supply chain more robust; and (iv) invest in data systems for patient tracking and for programme monitoring and evaluation. La délivrance des soins du VIH dans le déploiement initial rapide des soins et du traitement du VIH a été basée sur des modèles existants dans les cliniques, qui sont courants dans les régions bénéficiant d’importantes ressources et largement indifférenciées pour les besoins individuels. Un nouveau cadre est proposé ici pour le traitement basé selon les intensités variables de soins, adaptés aux besoins spécifiques des différents groupes de personnes à travers la cascade de soins. L’intensité des services est caractérisée par quatre éléments de délivrance: (1) les types de services délivrés, (2) l’emplacement de la délivrance des services, (3) Les prestataires des services de santé et (4) la fréquence des services de santé. La façon dont ces éléments sont développés dans un cadre de prestation de services peut varier selon les pays et les populations, l’intention étant d’améliorer les résultats d’acceptabilité et des soins. Le but d’obtenir plus de personnes sous traitement avant qu’ils ne tombent malades nécessitera des modèles innovateurs de prestation à la fois pour dépistage et pour les soins. Comme les programmes VIH étendent l’éligibilité au traitement, beaucoup de gens qui entrent dans les soins ne seront pas des “malades- mais des éléments sains de la société, actifs et productifs. Afin de tenir le cadre à l’échelle, il sera important de: (1) définir les individus qui peuvent être traités par un cadre alternatif de prestation, (2) renforcer les systèmes de santé qui soutiennent la décentralisation, l’intégration et le transfert des tâches; (3) rendre la chaîne d’approvisionnement plus robuste et (4) investir dans des systèmes de données pour le suivi des patients et pour le suivi et l’évaluation du programme. Los servicios de atención del VIH durante el inicio de la primera etapa de rápida expansión del tratamiento y cuidados del VIH estaban basados en modelos clínicos existentes, comunes en lugares con abundancia de recursos y poco diferenciados en cuanto a necesidades individuales. Aquí se propone un nuevo marco para el tratamiento basado en intensidades variables de cuidados, hecho a medida según las necesidades específicas de los diferentes grupos de individuos a lo largo del tratamiento. La intensidad del servicio se caracteriza por cuatro componentes de entrega: (1) tipología de los servicios ofrecidos, (2) lugar de entrega de los servicios, (3) proveedor de los servicios sanitarios, y (4) frecuencia de los servicios sanitarios. El cómo estos componentes conforman un marco de entrega de servicios variará según el país y la población, con la intención de mejorar la aceptabilidad y los resultados de los cuidados. El objetivo de conseguir que más personas reciban tratamiento antes de que enfermen requerirá de modelos innovadores en la oferta tanto de pruebas para detección como de los cuidados. A medida que los programas para el VIH expandan los criterios de elegibilidad para el tratamiento, muchas de las personas que comiencen a recibir cuidados no serán “pacientes- sino miembros sanos, activos y productivos de la sociedad. Con el fin de expandir la escala de esta estructura, sería importante: (1) definir cuales individuos pueden ser atendidos dentro de un marco de entrega de servicios alternativo; (2) fortalecer los sistemas sanitarios que apoyan la descentralización, integración y delegación de funciones; (3) robustecer la cadena de proveedores; e (4) invertir en sistemas de datos para el seguimiento de pacientes y para la monitorización y evaluación de programas.
                Bookmark

                Author and article information

                Contributors
                Role: ConceptualizationRole: Funding acquisitionRole: InvestigationRole: MethodologyRole: Project administrationRole: ResourcesRole: SupervisionRole: ValidationRole: VisualizationRole: Writing – original draftRole: Writing – review & editing
                Role: Data curationRole: Formal analysisRole: InvestigationRole: MethodologyRole: SoftwareRole: ValidationRole: VisualizationRole: Writing – original draftRole: Writing – review & editing
                Role: Data curationRole: MethodologyRole: Project administrationRole: SupervisionRole: Writing – original draftRole: Writing – review & editing
                Role: ConceptualizationRole: Data curationRole: Formal analysisRole: InvestigationRole: MethodologyRole: SoftwareRole: SupervisionRole: Writing – original draft
                Role: ConceptualizationRole: Project administrationRole: SupervisionRole: Writing – original draftRole: Writing – review & editing
                Role: InvestigationRole: MethodologyRole: VisualizationRole: Writing – original draftRole: Writing – review & editing
                Role: InvestigationRole: Project administrationRole: Writing – original draftRole: Writing – review & editing
                Role: Formal analysisRole: InvestigationRole: MethodologyRole: SoftwareRole: SupervisionRole: ValidationRole: VisualizationRole: Writing – original draftRole: Writing – review & editing
                Role: Funding acquisitionRole: ResourcesRole: Writing – original draftRole: Writing – review & editing
                Role: Funding acquisitionRole: ResourcesRole: Writing – original draftRole: Writing – review & editing
                Role: ConceptualizationRole: Funding acquisitionRole: InvestigationRole: MethodologyRole: SupervisionRole: ValidationRole: VisualizationRole: Writing – original draftRole: Writing – review & editing
                Role: InvestigationRole: VisualizationRole: Writing – original draftRole: Writing – review & editing
                Role: ConceptualizationRole: Funding acquisitionRole: Project administrationRole: ResourcesRole: SupervisionRole: ValidationRole: VisualizationRole: Writing – original draftRole: Writing – review & editing
                Role: ConceptualizationRole: MethodologyRole: ValidationRole: VisualizationRole: Writing – original draftRole: Writing – review & editing
                Role: ConceptualizationRole: Funding acquisitionRole: InvestigationRole: MethodologyRole: Project administrationRole: ResourcesRole: SupervisionRole: ValidationRole: VisualizationRole: Writing – original draftRole: Writing – review & editing
                Role: ConceptualizationRole: Formal analysisRole: Funding acquisitionRole: InvestigationRole: MethodologyRole: Project administrationRole: ResourcesRole: SoftwareRole: SupervisionRole: ValidationRole: VisualizationRole: Writing – original draftRole: Writing – review & editing
                Role: Academic Editor
                Journal
                PLoS Med
                PLoS Med
                plos
                plosmed
                PLoS Medicine
                Public Library of Science (San Francisco, CA USA )
                1549-1277
                1549-1676
                31 May 2019
                May 2019
                : 16
                : 5
                : e1002811
                Affiliations
                [1 ] Centre for Infectious Disease Research in Zambia, Lusaka, Zambia
                [2 ] University of California, San Francisco, San Francisco, California, United States of America
                [3 ] Ministry of Health, Lusaka, Zambia
                [4 ] University of California, Berkeley, Berkeley, California, United States of America
                [5 ] International Association of Providers of AIDS Care, Washington, District of Columbia, United States of America
                [6 ] University of Alabama at Birmingham, Birmingham, Alabama, United States of America
                [7 ] Johns Hopkins University, Baltimore, Maryland, United States of America
                [8 ] Georgetown University, Washington, District of Columbia, United States of America
                University of Southampton, UNITED KINGDOM
                Author notes

                I have read the journal’s policy and the authors of this manuscript have the following competing interests: EHG is a member of the Editorial Board of PLOS Medicine.

                Author information
                http://orcid.org/0000-0002-3898-2607
                http://orcid.org/0000-0002-4049-9868
                http://orcid.org/0000-0003-3787-365X
                http://orcid.org/0000-0002-0150-3369
                http://orcid.org/0000-0001-9103-7746
                http://orcid.org/0000-0002-4731-7828
                http://orcid.org/0000-0002-7924-6761
                http://orcid.org/0000-0002-0825-1424
                Article
                PMEDICINE-D-18-03398
                10.1371/journal.pmed.1002811
                6544202
                31150380
                7b0f206a-74df-4c00-b1b6-2f4f8e49d127
                © 2019 Sikazwe et al

                This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

                History
                : 4 October 2018
                : 23 April 2019
                Page count
                Figures: 4, Tables: 3, Pages: 17
                Funding
                Funded by: funder-id http://dx.doi.org/10.13039/100000865, Bill and Melinda Gates Foundation;
                Award ID: OPP1105071
                Award Recipient :
                Funded by: funder-id http://dx.doi.org/10.13039/100000060, National Institute of Allergy and Infectious Diseases;
                Award ID: P30A1027763
                Award Recipient : Elvin H Geng
                Funded by: funder-id http://dx.doi.org/10.13039/100000060, National Institute of Allergy and Infectious Diseases;
                Award ID: K24 AI134413
                Award Recipient : Elvin H Geng
                Funding for this study was provided by the Bill and Melinda Gates Foundation ( https://www.gatesfoundation.org) through grant number OPP1105071. This research has been facilitated by the infrastructure and resources provided by the Johns Hopkins University Center for AIDS Research, an NIH funded program (NIAID P30AI094189). EG was also supported by University of California, San Francisco-Gladstone Institute of Virology & Immunology Center for AIDS Research, Implmentation Science Working Group (NIH/NIAID P30 AI027763), and NIH/NIAID K24 AI134413. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
                Categories
                Research Article
                Biology and Life Sciences
                Microbiology
                Medical Microbiology
                Microbial Pathogens
                Viral Pathogens
                Immunodeficiency Viruses
                HIV
                Medicine and Health Sciences
                Pathology and Laboratory Medicine
                Pathogens
                Microbial Pathogens
                Viral Pathogens
                Immunodeficiency Viruses
                HIV
                Biology and Life Sciences
                Organisms
                Viruses
                Viral Pathogens
                Immunodeficiency Viruses
                HIV
                Biology and Life Sciences
                Organisms
                Viruses
                Immunodeficiency Viruses
                HIV
                Biology and life sciences
                Organisms
                Viruses
                RNA viruses
                Retroviruses
                Lentivirus
                HIV
                Biology and Life Sciences
                Microbiology
                Medical Microbiology
                Microbial Pathogens
                Viral Pathogens
                Retroviruses
                Lentivirus
                HIV
                Medicine and Health Sciences
                Pathology and Laboratory Medicine
                Pathogens
                Microbial Pathogens
                Viral Pathogens
                Retroviruses
                Lentivirus
                HIV
                Biology and Life Sciences
                Organisms
                Viruses
                Viral Pathogens
                Retroviruses
                Lentivirus
                HIV
                Medicine and Health Sciences
                Infectious Diseases
                Viral Diseases
                Viremia
                Biology and Life Sciences
                Microbiology
                Virology
                Viral Transmission and Infection
                Viral Load
                People and Places
                Geographical Locations
                Africa
                Zambia
                Medicine and health sciences
                Epidemiology
                HIV epidemiology
                Medicine and Health Sciences
                Public and Occupational Health
                Biology and Life Sciences
                Anatomy
                Body Fluids
                Blood
                Blood Plasma
                Medicine and Health Sciences
                Anatomy
                Body Fluids
                Blood
                Blood Plasma
                Biology and Life Sciences
                Physiology
                Body Fluids
                Blood
                Blood Plasma
                Medicine and Health Sciences
                Physiology
                Body Fluids
                Blood
                Blood Plasma
                Research and Analysis Methods
                Cell Enumeration Techniques
                Total Cell Counting
                Custom metadata
                All relevant data are within the manuscript and its supporting information files.

                Medicine
                Medicine

                Comments

                Comment on this article

                scite_

                Similar content55

                Cited by29

                Most referenced authors277