High rate of loss to clinical follow up among African HIV-infected patients attending a London clinic: a retrospective analysis of a clinical cohort

Abstract

BackgroundLong-term regular clinic follow up is an important component of HIV care. We determined the frequency and characteristics of HIV-infected patients lost to follow up from a London HIV clinic, and factors associated with loss to all HIV follow up in the UK.MethodsWe identified 1859 HIV-infected adults who had registered and attended a London clinic on one or more occasions between January 1997 and December 2005. Loss to follow up was defined as clinic non-attendance for one or more years. Through anonymized linkage with the Survey of Prevalent HIV Infections Diagnosed and Health Protection Scotland, national databases of all HIV patients in care in the UK up to December 2006, loss-to-follow-up patients were categorized as Transfers (subsequently received care at another UK HIV clinic) or UKLFU (no record of subsequent attendance at any HIV clinic in the UK). Logistic regression analysis was used to identify factors associated with UKLFU for those both on highly active antiretroviral therapy (HAART) and not on HAART.ResultsIn total, 722 (38.8%) of 1859 patients were defined as lost to follow up. Of these, 347 (48.1%) were Transfers and 375 (51.9%), or 20.2% of all patients, were UKLFU. Overall, 11.9% of all patients receiving HAART, and 32.2% not receiving HAART were UKLFU. Among those on HAART, risk factors for UKLFU were: African heterosexual female (OR = 2.22, 95% CI: 1.11-4.56) versus white men who have sex with men; earlier year of HIV clinic registration (1997-1999 OR: 3.51, 95% CI: 1.97-6.26; 2000-02 OR: 2.49, 95% CI: 1.43-4.32 vs. 2003-2005); CD4 count of < 200 versus > 350 cells/mm3 (OR = 1.99, 95% CI:1.05-3.74); and a detectable viral load of > 400 copies/ml (OR = 5.03, 95% CI: 2.95-8.57 vs. ≤ 400 copies/ml) at last clinic visit.Among those not receiving HAART, factors were: African heterosexual male (OR = 3.91, 95% CI: 1.77-8.64) versus white men who have sex with men; earlier HIV clinic registration (2000-2002 OR: 2.91, 95% CI: 1.77-4.78; 1997-1999: OR: 5.26, 95% CI: 2.71-10.19); and a CD4 count of < 200 cells/mm3 (OR: 3.24, 95% CI: 1.49-7.04).ConclusionsOne in five HIV-infected patients (one in three not on HAART and one in nine on HAART) from a London clinic were lost to all clinical follow up in the UK. Black African ethnicity, earlier year of clinic registration and advanced immunological suppression were the most important predictors of UKLFU. There is a need for all HIV clinics to establish systems for monitoring and tracing loss-to-follow-up patients, and to implement strategies for improving retention in care.

REACH: a mixed-methods study to investigate the measurement, prediction and improvement of retention and engagement in outpatient HIV care

“…Our findings are consistent with previous studies among UK populations in showing that disengagement from HIV care is more likely among women and less likely among MSM. 8,22 A study of gender disparities concluded that poorer engagement in HIV care by women was underpinned by a complex array of factors, 74 and findings from both our survey and analysis of UK CHIC data suggested that the association between gender and disengagement could be explained by other factors.…”

“…Previous studies have examined the association between engagement in HIV care, as defined by one of the measures described above, and background characteristics. Although health service provision and populations of PLWH vary from country to country, these studies suggest that PLWH are less likely to disengage from care if they are male, 8 older, 8,21,28,29 white 8,22 and men who have sex with men (MSM) 22,23 and have started ART. 8,21 Socioeconomic factors and education have been highlighted in relation to disparities in EIC 30,31 and complex patient groups, such as intravenous drug users, migrants and the newly diagnosed, are more likely to disengage from care.…”

“…Researchers have assessed retention in care in a number of different ways. [21][22][23][24][25] These measures have their own strengths and weaknesses, 26 but none of them takes into account the fact that frequency of attendance is related to changes in treatment and health status and may also be affected by external forces or changes in clinic policy. In the UK, for example, guidelines at the time the REACH study was conducted indicated that patients should be seen within 2-4 weeks of starting ART and every 3-6 months for routine monitoring on ART if they were considered 'stable', with good adherence and an undetectable viral load.…”

“…23 Although recent diagnosis is associated with poor retention in care, 8 there is also an indication that EIC can diminish over time. 22 Some studies have used qualitative methods and psychometric measures to try and understand why patients do not engage with care. HIV stigma is found to be a significant barrier [32][33][34][35] and health beliefs may also deter people from attending for care.…”

“…Assuming that patients were vulnerable to dropping out of care soon after diagnosis 8 and more likely to disengage from care the longer they had been diagnosed, 22 we grouped patients into three 3-year diagnosis periods. Grouping around 6000 patients into four trajectories is a necessarily broad-brush attempt to characterise how HIV patients engage in care over time.…”