Wanting to return to a ‘normal’ life after having experienced an improvement in health on HIV treatment was the key reason for loss to follow-up of three-quarters of patients who didn't return to a Kampala HIV clinic, according to a 10-year retrospective cohort analysis reported in the advance online edition of the Journal of Acquired Immune Deficiency Syndromes.
Analysis of the representative sample of 579 patients (19%) additionally showed that of the 83% (481) found alive, 43% (249) had stopped care.
Increased risks for stopping care included: religion, notably ‘born-again’ (23% believed prayer heals HIV); not being from Kampala but migrated, among other reasons, because of work, family, war or in search of health care; having school-age children not in school; not having disclosed HIV status; having CD4 cell counts equal to or above 250 cells/mm3 (AHR: 1.64 95% CI: [0.34-8.02], p = 0.540 or pre-ART AHR: 2.17 95% CI: [1.63-7.43], p = 0.021).
Scale-up of antiretroviral therapy (ART) in resource-poor settings has led to an improved quality of life for many people. However, retention in care remains a challenge, with increasing numbers being lost to follow-up in many ART programmes in these settings. Primary reasons identified include fee for service, distance to clinics, poverty and stigma.
In community-based care however, where peer workers bring the services closer to patients and provide a support system addressing many of the noted barriers to retention, reasons for loss to follow-up may well differ.
Recognising the importance of understanding these reasons, the authors chose to look at incidence and risk factors for loss to follow-up and death among patients enrolled in the Reach Out Mbuya HIV/AIDS Initiative. It provides free comprehensive community-based ART serving the urban poor in Kampala, the capital city of Uganda. Task-shifting, multiple pre-ART sessions, status disclosure to household members and family-based care are integral to the programme.
In 2006, increasing loss to follow-up led to revised policies to include pre-ART patients. In 2008, the introduction of electronic medical records and same-day tracing following missed clinic appointments further helped reduce loss to follow-up
With recent evidence of increased loss to follow-up, the authors incorporated within the study a research team of tracers, independent from Reach Out Mbuya to ensure anonymity and objectivity, to determine the outcomes of those considered lost to follow-up.
'Lost to follow-up' was defined as absence from the clinic for 90 days after the last appointment, not known to be dead and not having transferred to another facility. ‘Stopped care’ was defined as a patient found alive but not continuing care elsewhere. ‘Self-transferred’ referred to a patient found alive and continuing care elsewhere. The authors note costs and time preclude most ART programmes being able to trace patients, so the above distinctions are often all classified as lost to follow-up.
‘Returned to care’ referred to patients lost to follow-up but found alive and re-enrolled into care at Reach Out Mbuya.
A retrospective analysis to identify all patients over 18 years of age enrolled in Reach Out Mbuya who were lost to follow-up between May 31, 2001 and May 31, 2010 was undertaken. A representative sample was used to determine outcomes. Qualitative Interviews, focus group discussions and data analysis were used to understand reasons for loss to follow-up.
Of the 83% found alive 249 (43%) had self-transferred. The median time from enrolment to loss to follow-up was 1.14 years (IQR: 0.46-2.48 years).
The 61 (12.7%) who returned to care at a median time of 911 days (IQR: 525-1546 days) had significantly lower CD4 cell counts compared to when they were lost to follow-up 205 cells/mm3 (IQR: 172-440 cells/mm3, p<0.0001) and 401 cells/mm3 (IQR: 324-584 cells/mm3, p<0.0001), respectively, highlighting the importance of having the means to effectively track and identify those who need close monitoring.
The authors’ findings, while confirming previously identified barriers to retention, also revealed reasons challenging these. The need to return to a ‘normal’ life after having experienced a better quality of life was the primary reason for loss to follow-up according to the interviews. People living with HIV are acutely aware that their new ‘normal’ life has changed. They have to work hard to live with their condition and adapt to the disruptions to ‘normalise’ their everyday lives, relationships and activities.
Having been in the programme for one to four years was also a high risk for stopping care. The authors suggest patients having migrated to Kampala had stabilised and went back home after having an improved quality of life.
The influence of religion underscored the need to target religious leaders with discussions on the benefits of ART, the authors add.
The authors note that, surprisingly, only 6% of those interviewed spoke of stigma as a reason for stopping care. This may well reflect Reach Out Mbuya’s peer model of care in which 95% of the community workers are also clients.
While peer community health workers are recognised as important in follow-up, the authors note that patients felt close follow-up at home was “a barrier to continuity of care citing the need for confidentiality and their busy work schedules”.
Reach Out Mbuya provides financial and non-financial support to protect poor households from further impoverishment that ill health brings, so alleviating the need for those in poverty to choose between health care and food or shelter. Yet, many still stop care in spite of these benefits with patients citing poor staff attitudes and long waiting times, note the authors.
Low death rates in this lost to follow-up cohort is explained, they add, by this organised community system of care making early diagnosis, recognition and management of side-effects and prompt referrals the norm. Same-day tracing of loss to follow-up means death is reported within days of a missed appointment.
A strength of the study is that only 5.5% were untraceable.
The authors conclude “that many on ART have an improved quality of life. HIV care should be normalised and managed as a chronic disease with patients taking a central role in the management of their health while identifying those in need of close follow-up. Efforts are needed to improve referrals and mechanisms to track patients who transfer to different facilities; and trace those who stop treatment to convince them to return to care.”
Alamo ST et al. Return to normal life after AIDS as a reason for lost to follow-up in a community-based antiretroviral program. Advance online edition, J Acquir Immune Defic Syndr, doi: 10.1097/FTD.0b013e3182526e6a, 2012.