Retention challenges for a community-based HIV primary care clinic and implications for intervention

The present study sought to elucidate factors involved in loss to follow-up (LTF) among HIV-infected patients who had been receiving medical care at Fenway Community Health (FCH) located in Boston, Massachusetts. FCH provided care to 1143 HIV-infected patients in 2005, predominantly Caucasian men who have sex with men (MSM). Two approaches were used to address the research question. First, 495 patients were identified that had been LTF from 2001-2005. One hundred seventy-nine eligible patients completed a questionnaire to determine reasons for discontinuing care, representing a 51% response rate. Second, a cohort study was performed using the medical record data of 896 HIV-infected patients who were receiving medical care in the year 2000. Patients' utilization of primary medical care was followed until January 1, 2005 and predictors of LTF were examined using Cox proportional hazards regression modeling. Survey respondents reported that the greatest perceived barriers to care at FCH were personal/cultural, structural, and financial in nature. Twenty-two percent reported sporadic care elsewhere with gaps in care of 6 months or more, and 8% reported no regular provider for HIV. Significant predictors of LTF from regression analysis included: minority race/ethnicity, use of safety-net insurance, appointment nonadherence and no medical social work visits. To improve engagement and retention in care, organizations may use patient surveys for organizational self-assessment to effect operational changes that minimize barriers to care. A risk assessment tool based on evidence-based methods can be implemented to identify high-risk patients for innovative outreach interventions. The primary study limitation is the underrepresentation of minority and traditionally underserved populations.