Integration of Patient-Reported Outcomes Data among People with HIV in Washington, DC: a Sub-Cohort of the DC Cohort Longitudinal Study

Aim:Patient reported outcomes (PROs) can help to evaluate gaps and areas for improvement along the HIV care continuum. We sought to describe the methodology and processes of a PROs study within the DC Cohort study population, describe the PROs results to date, report on lessons learned, and describe future directions of the research. Subject and Methods:Each study site recruited participants from the DC Cohort, a longitudinal study on people with HIV, to complete the electronic PROs baseline and annual follow-up surveys, which consisted of previously validated measures of social determinants of health, mental health, substance use, medication adherence, and other related measures. The recruitment, enrollment, and data linkage process strengths and limitations were described. Participants' PROs survey responses were linked to their DC Cohort data to better understand participant's health overall. Results:There have been 1,739 baseline, 610 first annual, and 142 second annual completed surveys between May 2021 and May 2024. Among PROs participants, the most common reported unmet need was food insecurity (33.5%) and the most common mental health condition was generalized anxiety disorder (39.5%). A majority (59.7%) of participants reported being sexually active, but at least half did not use barrier protection. Conclusion:PROs surveys complement electronic health record data collected in the DC Cohort study, allowing for examination of health outcomes and factors collected in a longitudinal manner. PROs results could be integrated into near-real time dashboards for use by clinicians and incorporated into routine clinical care to provide a more holistic understanding of the patient.