Objective: There is international interest in the integration of patient-reported outcome measures (PROMs) into routine HIV care, but little work has synthesized the content of published initiatives. We conducted a rapid scoping review primarily to identify their selected patient-reported outcomes and respective instruments.
Methods: Four databases were searched on 4 May 2022 (Medline, Embase, CINAHL and PsychINFO) for relevant English language documents published from 2005 onwards. Dual review of at least 20% of records, full texts and data extraction was performed. Outcomes and instruments were classified with an adapted 14-domain taxonomy. Instruments with evidence of validation were described.
Results: Of 13 062 records generated for review, we retained a final sample of 94 documents, referring to 60 distinct initiatives led mostly in the USA (n = 29; 48% of initiatives), Europe (n = 16; 27%) and Africa (n = 9; 15%). The measured patient-reported outcome domains were: mental health (n = 42; 70%), substance use (n = 23; 38%), self-management (n = 16; 27%), symptoms (n = 12; 20%), sexual/reproductive health (n = 12; 20%), physical health (n = 9; 15%), treatment (n= 8; 13%), cognition (n = 7; 12%), quality of life (n = 7; 12%), violence/abuse (n = 6; 10%), stigma (n = 6; 10%), socioeconomic issues (n = 5; 8%), social support (n = 3; 5%) and body/facial appearance (n = 1; 2%). Initiatives measured 2.6 outcome domains, on average (range = 1-11). In total, 62 distinct validated PROMs were identified, with 53 initiatives (88%) employing at least one (M = 2.2). Overwhelmingly, the most used instrument was any version of the Patient Health Questionnaire to measure symptoms of depression, employed by over a third (26; 43%) of initiatives.
Conclusion: Published PROM initiatives in HIV care have spanned 19 countries and disproportionately target mental health and substance use.
Keywords: HIV; clinical practice; measurement; mental health; patient-reported outcomes; screening; substance use.
© 2024 The Authors. HIV Medicine published by John Wiley & Sons Ltd on behalf of British HIV Association.