Reasons for Discontinuation of and Return to Care
Overall, 86.0% of ROMs' patients originated from outside Kampala with 38.2% of them having migrated in search of health care. Other reasons for migration include search of work (27.5%), war (11.9%), marriage (10.3%), and family move (9.3%). In the 12 months before the evaluation, 406 (6.8%) of the patients interviewed had ever traveled in and out of Kampala with 174 (39.0%) of them having traveled 10 or more times. The main reasons for travel were business 169 (35.1%), work 73 (15.0%), looking for accommodation 42 (8.7%), prayers 35 (7.3%), and burial 27 (5.6%).
One hundred thirteen (23.5%) of the patients believed that prayer heals HIV, and 45 (8.8 %) of them discontinued care because of religious beliefs with the majority, (38%) being “born again”, 39 (34.1%) Protestants, 23 (20.4%) Catholics, and 8 (7.1%) Muslims. The FGDs confirmed the influence of religion on retention. “I will not go to ROM anymore. I feel healthier now with prayers than when I was when taking ARVs. My pastor is kind and treats me better than the staff at ROM used to” (FGD 1-female patient). Some staff suggested that many patients are desperate and vulnerable when they learn they are HIV positive and resort to prayer as a coping mechanism.
Forty-nine (9.7 %) of the patients discontinued care because of the inconvenience to their work with 41 (91.4%) having self-transferred. “I got a job as a truck driver. I travel long distances and sometimes I am away from Kampala for several months. I used to miss my clinic appointments and yet ROM would not give me drugs for more than one month. I went to another clinic which is not as strict as ROM” (FGD 2-male patient).
HIV Status Disclosure
Overall, 160 (33.3%) patients had a CD4 count <250 cells per cubic millimeter and were eligible for ART at their last clinic visit but had not initiated ART because of lack of HIV status disclosure. In addition, 31 (6.1%) of the patients discontinued care at ROM because of lack of HIV status disclosure of which 21 stopped care.
One hundred twenty-three (21%) of the patients reported that their children were out of school, and lack of money for fees was cited as the main reason.
The median household size was 7 (range: 1–18). Three hundred twenty (55.3%) of the patients lived in rented houses and 290 (90%) of them could barely afford the rent, which on average is US $30 per month “I took my children to my mother in the village because I could not afford to look after them in Kampala. I had to travel to check on them every month and eventually I could no longer afford the transport back and forth and remained in the village” FGD 3-female patient.
Five patients returned to care for the need of school fees, whereas 39 (7.7%) discontinued care because they had failed to pay back the loans they had received from ROM. During the FGD, 7 of 10 of the patients who self-transferred highlighted that they felt the system to determine who receives financial or nonfinancial benefits were unfair. The staff on the other hand said some patients moved into ROMs catchment area to get benefits “some patients brought children of their relatives so that they could benefit from the school fees and when they did not receive these services they left ” FGD 6-male CATTS.
Catchment Area Restrictions
Only 26.4% of the patients found alive were still resident within ROMs catchment area. Of these, 175 (49.9%) had stopped care. Fourteen (22.0%) of the patients returned to care because the catchment area had been expanded to include their villages. The FGD responses revealed several challenges regarding the catchment area restrictions. Nine of the 10 patients who self-transferred mentioned that they could not afford the cost of rent within ROMs catchment area anymore. “I liked the services at ROM, but I could not afford the rent anymore. I failed to get a cheap house within the catchment area so I moved and the staff at ROM would not allow me continue getting my drugs” FGD 5-male patient. The staff on the other hand felt the catchment-area restrictions were good because it allowed for easy patient follow-up. However, others said it delayed enrollment into care and very sick patients may die before they get care.
Almost all, 533 (92.1%) of the patients walked to ROM clinics. None of the interviewed patients mentioned lack of transport or distance as a barrier to clinic attendance. Majority, 108 (43.5%) of those who self-transferred went to private clinics and 9/10 of the patients mentioned that they would return to ROM because of the high transport costs to other facilities. Moreover, those who returned to care cited the easy access to ROMs clinics as the reason for their return.
Ninety-three (19.3%) of the patients discontinued care because of long waiting times with 33 (33.0%) having stopped. However, 2 patients returned to care because they experienced longer waiting times elsewhere. “I got a job and was tired of reporting for work late. I came to the clinic at 6 AM but still left after 11 AM”.
Ninety (18.7 %) of the patients discontinued care because of the strict follow-up procedures. Of these, 73% (66) self-transferred. During the FGD, 9 of the 10 patients who self-transferred said they disliked the routine visits by the CATTS. “I dislike being treated like a child. The CATTS comes to my house every week to count my pills. When I go to the clinic they also count my pills. Sometimes, they make mistakes in counting my pills and they harass me about not taking my drugs well” FGD 2-male patient. The patients disclosed that there was forced HIV status disclosure by the CATTS, who are well known within the communities “My CATTS comes to my house wearing the ROM T-shirt and people around get to know that I am HIV positive and they start stigmatizing me”. FGD 2-male patient “I had just tested HIV positive and I had not yet disclosed to my new husband. The ROM staff insisted on coming to my house. My husband beat me up claiming I had infected him with HIV. Since then I have not seen him”. FGD 3-female patient. Additionally, they disliked the monthly clinic visits and desired longer appointment schedules. “I have taken septrin for a long time. It is cheap and I can easily get it in the drug shops. I do not see why I should come and line up in the clinic every month to see a doctor to prescribe for me septrin” FGD 2-Male patient.
Strict ART Eligibility Criteria and Delayed Initiation of ART
The patients felt the lengthy and many pre-ART adherence counseling sessions, demands for HIV-status disclosure, and a family treatment supporter in addition to a CATTS from ROM was too demanding.
Rapid scale-up of ART has improved the quality of life of People Living with HIV/AIDS, but challenges regarding retention in resource-limited settings remain. Quality of service, cost, poverty, long travel distances to clinics, low education levels, and stigma are commonly cited barriers to retention.3,8–10,23 Medication toxicity, alcohol abuse, and comorbidities are also frequently cited barriers.24–29 Several strategies have been proposed to optimize retention some of which include the following: a free service,23 peer-led support including outreaches and home visits,30,31 active patient tracing systems,32 and decentralized ART delivery with functional referral systems.33
We found reasons for LTFU from ROM, which confirms the aforementioned barriers to retention, but we also found reasons that challenge some of the cited barriers.
Like in other studies,34 we found substantial misclassification of patients as LTFU highlighting the challenges that many programs with increasing caseloads face in patient follow-up.35
Our key finding is the need to return to a normal life after an improved quality of life as revealed by the qualitative interviews. “Normalization” does not imply that patients will return to their earlier life. People living with HIV know that their new “normal” life has changed because it is punctuated with taking medicine and regular professional interventions, but they strive to manage and live with their condition, adjust to the disruption of “normal” routines, and so “normalize” their everyday lives, work and leisure activities, and relationships.
We found a high risk of stopping care in patients who have been in the program for 1–4 years. This may be explained by the stabilization of patients, who had migrated to receive care and had acute illnesses at enrollment and returned back home when their quality of life improved. Providing services within a defined catchment area was found to be prohibitive to access and continuity of care by the poor patients who are mobile or threatened by the increasing costs of living in the area. An alternative model of following up patients even when they are not in the targeted area needs to be sought, for example, through the mobile phone.
High poverty and low education makes it very hard for ROMs patients to understand and comply with certain aspects of care and treatment which include the influence of religion and the need for HIV-status disclosure. Religious leaders may not understand the biomedical aspects of ART. There is need to target them with discussions on the benefits of ART. A substantial number of patients who were already eligible for ART at their last clinic visit had not initiated ART because of nondisclosure, highlighting the need for strategies to enforce disclosure including couple and home based counseling and testing or removal of disclosure as a requirement for ART initiation for some patients. In addition, there is need to review the procedures for initiation of ART including the timing and number of pre-ART counseling sessions. Ironically, though only 6% of the interviewed patients mentioned stigma as the reason for discontinued care. This may be attributed the peer model of care which has about 95% of its community workers drawn from its clients. The model encourages patient testimonies; formation of community support groups and every patient is assigned a community supporter who visits them at home to enforce adherence and retention.
The higher rate of discontinuation of care by pre-ART patients may be due to the perceived good health and broadly focused adherence counseling for these patients. Broadly focused interventions are often less effective than individually tailored interventions which strategically target specific individual barriers.36
Forty-three percent of the patients self-transferred and is comparable to that reported by Geng et al37 in a cohort in rural Uganda confirming that as the number of facilities offering ART expands, more patients reported as LTFU may have transferred informally to another facility. Worrying though is the big number of patients who self-transfer to private clinics where there may be unregulated ART prescription practices. Majority of the patients in our study self-transferred because they had returned to work or back home after their quality of life improved. It is, therefore, important that the pace of ART rollout to rural facilities be increased to match the needs of those returning home.
Engagement of peer community health workers has been identified as important in continuation in follow-up.20,35 However, our findings reveal that close follow-up through home visits are a barrier to continuity of care with patients citing the need for confidentiality and their busy work schedules. Additionally, patients cited poor staff attitudes and long waiting times as a barrier. We attribute this to the increasing case load, which can be solved by efficiency improvement interventions.21 Stable patients could be allowed to participate in scheduling their appointments with provision for longer appointment schedules and pharmacy only visits. However, there is need to identify patients at risk of stopping treatment who should be a priority for home visits and tracing.
About 30% of Uganda's population lives below US $1 a day,38 yet the costs of long-term care associated with HIV, combined with the loss of productivity and income resulting from chronic ill health perpetuate poverty. Many patients have therefore discontinued care because of the competing needs for food, shelter, and affordable transport. ROM has identified strategies aimed at protecting poor households from the impoverishment associated with ill health and the benefits of provision of financial and nonfinancial support in reducing mortality and LTFU in this cohort have been documented.17 However, the positive findings obscure the realities for those who discontinue care despite having received these benefits. With improved quality of life and the return to work, factors that affect satisfaction with health care including waiting times and provider attitudes may override financial and nonfinancial benefits and patients will shop around for the best options.
Mortality amongst our LTFU group was low compared with what other studies have found,5,6,11,12 which is attributed to the presence of an organized community system of care which facilitates early diagnosis, recognition, and management of side-effects and prompt referrals. Additionally, the same day tracing of patients who are LTFU20 ensures that those who have died are documented within few days of a missed clinic appointment.
The strength of our study is that only 5.5% of the patients were untraceable. However, patients who could not be traced may have died leading to underestimation of mortality. Furthermore, we used program data, which were collected for patient follow-up and not for research purposes.
Reach Out addresses many barriers related to poor retention, but major challenges remain ahead. Many patients on ART have an improved quality of life. HIV care should therefore be normalized and managed as a chronic disease with the patients taking a central role in the management of their health while identifying those in need of close follow-up. Efforts should be made to improve referrals and mechanisms to track patients referred between sites. Additionally, tracing of patients who stop treatment is required to convince them to return to care.
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Keywords:© 2012 Lippincott Williams & Wilkins, Inc.
loss to follow up; stopped care; self-transferred; patient tracing