Routine collection of patient-reported outcomes in HIV clinics: lessons learned after more than 130 000 assessments have been completed.

OBJECTIVE

Patient-reported outcomes (PROs) provide important information to improve healthcare and facilitate research but can be difficult to implement in busy care settings.

DESIGN

We integrated PRO collection into HIV care (2008-2024) with results summarized for providers to improve clinical care.

METHODS

PWH presenting for HIV care at nine clinics across the United States in the CFAR Network of Integrated Clinical Systems (CNICS) were asked to complete a touch-screen-based PRO assessment at routine clinic visits using a web-based application.

RESULTS

21 725 PWH completed the CNICS clinical PRO assessment 132 240 times (mean 6.1 assessments per PWH). Mean age at initial assessment was 43.8  years, 24.9% screened in for depression, 35.5% reported heavy episodic (binge) drinking, 38.9% smoking, 10.9% methamphetamine use, 11.7% recent intimate partner violence, and 8.4% reported unstable housing in the prior 30 days.

DISCUSSION: We implemented a PRO assessment into HIV care at nine geographically dispersed clinics. PRO responses in domains known to drive adverse outcomes such as substance use were identified as were situational concerns such as unstable housing. This study demonstrated that use of a well designed PRO platform can address many of the barriers of paper and interview-based collection and be sustainable over time even as clinic flow and content priorities evolve. It demonstrated that PROs done for clinical care are useful to address clinically relevant research questions and institutional needs. Finally, this study demonstrated the feasibility of wide-spread implementation of a clinical PRO assessment into busy HIV clinical care settings with >130 000 assessments completed to date.