Examining references to patient-reported outcome and experience measures in HIV clinical guidelines: A scoping review

AbstractBackgroundInterest in the use of patient-reported measures (PRMs) in HIV care has increased, in part, since the introduction of the UNAIDS “fourth 95” target, which emphasizes monitoring quality of life (QoL). While guidance documents exist for this purpose, studies suggest that PRM use in clinical practice is limited, raising questions about the state of current recommendations for PRMs in HIV clinical guidelines.ObjectivesThus, we aimed to synthesize PRM recommendations in HIV clinical guidelines to describe the guidelines’ characteristics, the recommended PRM tools, administration timing and frequency, and the formal evidence grades assigned to these recommendations.MethodsWe conducted a scoping review of HIV clinical guidelines from the Organization for Economic Cooperation and Development (OECD) countries. We searched for guidelines published from January 2017 to January 2025 within Medline, Embase, and CINAHL. Guidelines were included if they addressed adult HIV clinical care, referenced antiretroviral therapy (ART), mentioned PRMs and were published in English, French, Spanish, or Portuguese. Data on HIV clinical guideline characteristics, PRM recommendation characteristics including proposed PRM types, domains, and timing as well as evidence grading was extracted and analyzed using content analysis, as applicable.ResultsNinety-four guidelines were identified, of which 25 (26%) mentioned PRMs with only 14 (15%) recommending them. These 25 guidelines originated mainly from Spain (28%), global organizations (24%), and the USA (16%). All guidelines proposed at least one outcome domain. Among these, 44% addressed the patient-reported outcome domain of mental health (e.g., PHQ-9, GAD-2), 28% QoL (e.g., SF-36, PROMIS), 28% adherence or self-management, 24% treatment-related symptoms and 20% substance use. Seventeen guidelines (68%) provided insights on timing administration. Among these, 20% suggest annual assessments, 20% periodic or regular administration, 16% at every clinical visit, and 16% before starting ART. Six guidelines (24%) mentioned patient-reported experience measures (PREMs) (e.g., satisfaction surveys). Only 7 (28%) included a formal evidence grade for PRM recommendations (e.g., AII).ConclusionDespite growing interest in PRM use for HIV care, only a quarter of guidelines mentioned them, while less than one-fifth providing recommendation statements on their proposed use. Variable recommendations on measure selection, timing, and implementation could lead to missed opportunities for improving psychosocial support, adherence, and QoL. Standardized, evidence-based guidance is needed to fully integrate PRMs into routine, patient-centered HIV care

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