In or out of HIV-care? It depends who you ask

Sorting through the lost and found: are patient perceptions of engagement in care consistent with standard continuum of care measures?

Castel AD, Tang W, Peterson J, Mikre M, Parenti D, Elion R, Wood A, Kuo I, Willis S, Allen S, Kulie P, Ikwuemesi I, Dassie K, Dunning J, Saafir-Callaway B, Greenberg A. J Acquir Immune Defic Syndr. 2015 May 1;69 Suppl 1:S44-55. doi: 10.1097/QAI.0000000000000575.

Background: Indicators for determining one's status on the HIV care continuum are often measured using clinical and surveillance data but do not typically assess patient perspectives. We assessed patient-reported care status along the care continuum and whether it differed from medical records and surveillance data.

Methods: Between June 2013 and October 2014, a convenience sample of clinic-attending HIV-infected persons was surveyed regarding care-seeking behaviors and self-perceived status along the care continuum. Participant responses were matched to DC Department of Health surveillance data and clinic records. Participants' care patterns were classified using Health Resources Services Administration-defined care status: in care (IC), sporadic care (SC), or out of care (OOC). Semistructured qualitative interviews were analyzed using an open coding process to elucidate relevant themes regarding participants' perceptions of engagement in care.

Results: Of 169 participants, most were male participants (64%) and black (72%), with a mean age of 50.7 years. Using self-reported visit patterns, 115 participants (68%) were consistent with being IC, 33 (20%) SC, and 21 (12%) OOC. Among OOC participants, 52% perceived themselves to be fully engaged in HIV care. In the previous year, among OOC participants, 71% reported having a non-HIV-related medical visit and 90% reported current antiretroviral use. Qualitatively, most SC and OOC persons did not see their HIV providers regularly because they felt healthy.

Conclusions: Participants' perceptions of HIV care engagement differed from actual care receipt as measured by surveillance and clinical records. Measures of care engagement may need to be reconsidered as persons not receiving regular HIV care maybe accessing other health care and HIV medications elsewhere.

Abstract access  [1]

Editor’s notes: This interesting mixed methods study examined engagement and retention in HIV care among people living with HIV in Washington DC. In addition to the convenience sample of clinic attendees listed in the abstract of the paper, data were also accessed on people who had not received clinical care in the previous 12 months, according to clinic records. These people were being focused on by a Department of Health initiative to re-engage them in care. As the clinic staff contacted people to re-engage with them they were offered the opportunity to be recruited into this study. A very helpful diagram on page S46 of this paper sets out this recruitment strategy. This sampling approach allowed the authors to compare data collected from an interviewer-administered structured survey (collecting self-reported data) with data abstracted from clinic records (with the participant’s consent)  and data from Department of Health surveillance records. In addition 62 of the participants took part in in-depth interviews. In keeping with other studies on linkage to care, the authors found that participants who were considered ‘out of care’ by the Department of Health and clinic records did not necessarily consider themselves to be out of care. These were often people who were doing well and saw no need to visit the clinic regularly, particularly if, for individuals on antiretroviral therapy, they were able to access drug supplies from other sources. 

The study also suggests the importance of understanding the limitations of different data sources.  While the limitations of self-reported data are well known, the authors also highlight the drawback of using clinic records. The Department of Health re-engagement initiative had found that 57% of the people thought to be out of care were actually receiving care elsewhere. The authors therefore stress the importance of using a combination of data sources in care surveillance. 

Many people considered to be ‘out of care’ by their clinic were surprised to have had this label applied to them. The authors suggest that this finding emphasises the need for better communication between provider and patient so that treatment goals and the importance of regular clinic visits are understood. However, they go on to say that this finding also supports the on-going process of rethinking definitions of ‘engagement in care’ to be more responsive to individual needs and perceptions. Indeed the change in the United States Department of Health and Human Services guidelines to recommend that patients who are virally suppressed can be monitored less-frequently, is in keeping with this suggestion.

Northern America [8]
United States of America [9]
  • [10]