What happens to ART-eligible patients who do not start ART? Dropout between screening and ART initiation: a cohort study in Karonga, Malawi

Abstract

BackgroundRoutine ART programme statistics generally only provide information about individuals who start treatment. We aimed to investigate the outcome of those who are eligible but do not start ART in the Malawi programme, factors associated with this dropout, and reasons for not starting treatment, in a prospective cohort study.MethodsIndividuals having a first screening visit at the ART clinic at Karonga District Hospital, northern Malawi, between September 2005 and July 2006 were interviewed. Study follow-up to identify treatment outcomes was conducted at the clinic and in the community. Logistic regression models were used to identify factors associated with dropout before ART initiation among participants identified as clinically eligible for ART.Results88 participants eligible for ART at their first screening visit (out of 633, 13.9%) defaulted before starting ART. Participants with less education, difficulties in dressing, a more delayed ART initiation appointment, and mid-upper arm circumference (MUAC) < 22 cm were significantly less likely to have visited the clinic subsequently. Thirty-five (58%) of the 60 participants who defaulted and were tracked at home had died, 21 before their ART initiation appointment.ConclusionsMUAC and reported difficulties in dressing may provide useful screening indicators to identify sicker ART-eligible individuals at high risk of dropping out of the programme who might benefit from being brought back quickly or admitted to hospital for observation. Individuals with less education may need adapted health information at screening. Deaths of ART-eligible individuals occurring prior to ART initiation are not included in routine programme statistics. Considering all those who are eligible for ART as a denominator for programme indicators would help to highlight this vulnerable group, in order to identify new opportunities for further improving ART programmes.

Delay of Antiretroviral Therapy Initiation Is Common in East African HIV-Infected Individuals in Serodiscordant Partnerships

“…Studies from a variety of African settings have found that personal and provider barriers to ART initiation include stigma and denial of need for ART, lack of symptoms (which could decrease motivation to initiate life-long therapy), fear of ART side effects, transportation costs, lengthy pre-treatment processing, and lack of access to CD4 testing [7–10]. Understanding factors associated with ART-eligible individuals delaying or declining treatment will inform how to improve retention in pre-ART care, reduce HIV-associated morbidity, and help design strategies to motivate treatment initiation at higher CD4 counts, particularly as treatment guidelines evolve towards treating earlier in the course of disease.…”

Risk of death among those awaiting treatment for HIV infection in Zimbabwe: adolescents are at particular risk

“…The importance of the pre-ART period is highlighted here, as elsewhere, by the finding that about 21% of all programmatic deaths in our cohort occurred prior to the initiation of ART [18–20]. As has been pointed out by others, if pre-ART deaths are not included in routine programme reporting, then overall programme outcomes may appear misleadingly favourable [3,5]. Principally this is because those with more advanced disease are more likely to die in the pre-ART period, with those commencing ART having a relative survival advantage.…”

“…Although we cannot establish the underlying reasons for this in our cohort, a study in Malawi within which similar numbers of eligible patients failed to commence ART, found 58% of such patients to have died [3,17]. Patients who do not die may return at a later stage with more advanced disease whereas some may have re-registered for HIV care elsewhere.…”

“…There has been much focus in HIV programmes on outcomes among those who start ART, but HIV-positive individuals awaiting initiation of ART have been largely overlooked [2,3]. Management of HIV-positive individuals in the pre-ART period should include regular clinical and CD4 count monitoring and provision of cotrimoxazole prophylaxis.…”

“…Management of HIV-positive individuals in the pre-ART period should include regular clinical and CD4 count monitoring and provision of cotrimoxazole prophylaxis. Mortality and loss to follow-up (LTFU) in this period can be high but individuals defaulting from services at the pre-ART stage are often not followed up, unlike among those missing clinic appointments after commencing ART [3–7] .…”