Abstract
BackgroundPeople living with HIV experience burdensome multidimensional symptoms and concerns requiring person-centred care. Routine use of patient reported outcome measures can improve outcomes. There is no brief patient reported outcome measure (PROM) that currently reflects the breadth of concerns for people living with HIV. This study aimed to develop and cognitively test a brief novel patient reported outcome measure for use within routine adult HIV care– the “Positive Outcomes” HIV PROM.MethodsDevelopment followed the COSMIN taxonomy and guidance for relevance and comprehensiveness, and Rothrock guidance on development of valid patient reported outcome measures. The Positive Outcomes HIV PROM was developed by a steering group (people living with HIV, HIV professionals and health services researchers) using findings from a previously reported qualitative study of priority outcomes for people living with HIV. The prototype measure was cognitively tested with a purposive sample of people living with HIV.ResultsThe Positive Outcomes HIV PROM consists of 23 questions (22 structured, and one open question) informed by the priorities of key stakeholders (n = 28 people living with HIV, n = 21 HIV professionals and n = 8 HIV commissioners) to ensure face and content validity, and refined through cognitive testing (n = 6 people living with HIV). Cognitive testing demonstrated high levels of acceptability and accessibility.ConclusionsThe Positive Outcomes HIV PROM is the first brief patient reported outcome measure reflecting the diverse needs of people living with HIV designed specifically for use in the clinical setting to support patient assessment and care, and drive service quality improvement. It is derived from primary data on the priority outcomes for people living with HIV and is comprehensive and acceptable. Further psychometric testing is required to ensure reliability and responsiveness.
Highlights
People living with HIV experience burdensome multidimensional symptoms and concerns requiring person-centred care
This article presents the development and initial cognitive testing of a novel, brief, patient-centred patient reported outcome measure (PROM) for use in routine adult HIV care that reflects the range of multidimensional outcomes relevant to people living with HIV to drive and evaluate care
Adhering to COSMIN principles [25] interviews were chosen to explore priorities for people living with HIV, as well as their views regarding the design of the PROM
Summary
People living with HIV experience burdensome multidimensional symptoms and concerns requiring person-centred care. Despite advances in antiretroviral therapy (ART), people living with HIV have worse health related quality of life than the general population [2], and disproportionate burden of poor mental health [3, 4]. Their physical, cognitive, psychological, social, spiritual, welfare and informational needs are highly interrelated, and persisting HIV stigma can reduce access to appropriate support [5]. Person-centred care incorporating patient reported outcome measures (PROMs) can improve patientclinician communication, clinical decision-making, symptom recognition and treatment adherence [12, 13]. As well as improving outcomes at an individual level, PROMs can ensure services deliver equitable and high quality care that meets the needs of their population [14, 15]
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