Impact of the Outpatient Clinic Experience on Retention in Care: Perspectives of HIV-Infected Patients and Their Providers

Dear Editor: Only 25% of HIV-infected persons in the United States are virally suppressed, in part due to the multiple challenges patients face in navigating the healthcare system. Retention in care is critical to HIV treatment success and represents the step along the HIV care continuum (HIV testing, linkage to care, retention in care, initiation of antiretroviral therapy (ART), and viral suppression) with the highest attrition rate. Prior studies have mostly focused on patient-level barriers (e.g., HIV stigma, substance abuse, mental illness, food/housing insecurity), with few focusing on the clinic experience, despite the finding that patient satisfaction with their HIV clinic strongly correlates with HIV outcomes. We aimed to elicit patient and provider perspectives on the outpatient HIV clinic experience to identify targets for future interventions. We recruited HIV-infected adults (‡ 18 years) from three Ryan White Program-funded clinics in Philadelphia between March and November 2013. Using purposive sampling, patients with varying retention in care (defined as completing ‡ 2 primary HIV care visits separated by ‡ 90 days in the 12month period prior to interview) and viral suppression (defined as median HIV-1 RNA in the 12-month period prior to interview £ 400 copies/mL) patterns were invited by phone or in the clinic waiting room to participate in qualitative, semi-structured interviews. Patients were compensated $25 for their time. HIV care providers at these clinics were invited electronically. Recruitment concluded when we reached thematic saturation. The institutional review board of each clinic approved the study. Two interview guides (patient and provider) were developed to elicit perspectives on the outpatient HIV clinic experience. Interviews began with open-ended questions exploring interviewee perspectives on HIV care and treatment. Then, interviewees were asked to reflect on barriers and facilitators to engagement in care, relationships between patient and provider/clinic staff, and navigating the healthcare system. Lastly, interviewees were asked to share any additional thoughts on the HIV care experience. In-person interviews lasted 20–30 min. After piloting the patient interview guide with 6 individuals, the research team met to review early transcripts and adjust the interview guide to better capture perspectives. All interviews were audio recorded, professionally transcribed, and imported into NVivo10 software for analysis (QSR International, Melbourne, Australia). Data were analyzed for themes and patterns using a grounded theory approach, a methodology that involves iterative development of theories about what is occurring in the data as they are collected. First, an initial set of transcripts was reviewed lineby-line to generate a working coding scheme. Then, using this scheme, we independently coded a second set of transcripts and revised the scheme until no new themes were identified. Lastly, after assessing inter-rater reliability, the final coding scheme was applied to all transcripts. Identified themes were compared to assess patient and provider perspectives on the outpatient HIV clinic experience. A total of 51 HIV-infected patients were interviewed (Table 1). Median age was 45 years; 24 patients were female, and most were of minority ethnicity (87%). Over half of the patients (69%) had a CD4 count ‡ 350 cells/mm at the time closest to interview, 25 (49%) were retained in care, and 29 (57%) were virologically suppressed. Among the 13 providers interviewed, 11 were physicians and 2 were nurse practitioners; 5 were female and 4 were of minority ethnicity. Based on transcript analysis, interviewee responses about the outpatient HIV clinic experience were conceptualized into three stages: pre-appointment interactions (appointment and transportation scheduling, reminder phone calls), waiting room experiences (contact with staff and other patients, stigma, privacy, wait time length), and the patient-provider relationship (trust, mutual respect, communication). Patients