The development and cognitive testing of the positive outcomes HIV PROM: a brief novel patient-reported outcome measure for adults living with HIV

Abstract

Background: People 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. Methods: Development 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. Results: The 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. Conclusions: The 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.

Development of a Clinic Screening Tool to Identify Burdensome Health-Related Issues Affecting People Living With HIV in Spain

“…The selected issues are quite similar to those chosen for inclusion in a recent PROM developed by Bristowe et al (2020) and colleagues on the basis of research conducted in England and Ireland. Those authors have reported the content and face validity of their new instrument.…”

“…Despite the contribution that this type of PROM could make to routine clinical care, this remains an area under development. The only such instrument that we are aware of in the HIV field is currently being developed by Bristowe et al (2019Bristowe et al ( , 2020, with the content of the instrument guided by qualitative research involving PLHIV and other key stakeholders in England and Ireland.…”

Patient-reported outcomes and patient-reported outcome measures in interstitial lung disease: where to go from here?

“…Another concern with PROMs is that they are likely to be more precise in capturing patient perceptions and their variation over time in homogeneous target populations, such as patients within a set range of disease severity [94]. This may limit their generalisability to large, multicentre and multinational clinical trials with widespread geographic, cultural and socioeconomic differences between participating patient populations [95]. Furthermore, if a wide range of disease severity is represented in a therapeutic trial, the realistic patient goals, expectations and perceptions may further vary greatly.…”

Redefining therapeutic success in HIV patients: an expert view

“…Several questionnaires can assess the patient’s QoL in a general way, including the Pittsburgh Sleep Quality Index, the EuroQol-5D (EQ-5D), the 12-Item Short Form Health Survey (SF-12), the 20-Item Short Form Health Survey (SF-20) and the 36-Item Short Form Health Survey (SF-36). More specifically, the King’s College ‘Positive Outcomes’, 125 the HIV Symptom Index (HIV-SI), the WHO Quality of Life in HIV-infected Persons instrument (WHOQOL-HIV), the HIV-QOL and the Patient Reported Outcomes Quality of Life-HIV (PROQOL-HIV) 126 are used for HIV patients.…”

“…124 , 127–130 PROs are emerging as one of the key areas for exploring HIV infection as a chronic disease with an almost normal life expectancy. 125 , 131–134 The maintenance of both long-term physical and mental health is considered the main challenge for HIV medicine, but these variables can be missed by health professionals in busy appointments. Thus, the routine use of PROs may help to identify patients’ problems and concerns and improve their progress by revealing and managing these issues.…”