Using intersectionality to inform fit-for-purpose patient-reported outcome measure development: a qualitative interview study

Abstract Background Patient-reported outcome measures (PROMs), often self-report questionnaires, capture a patient’s health status as reported directly by the patient. PROMs are increasingly being used to collect patients’ perspectives regarding health outcomes influencing their treatment and broader decisions about intervention efficacy, reimbursement, and service provision. Concerns are growing about how fit-for-purpose many PROMs are, with implications for health inequity. Health researchers are starting to explore how intersectionality can be used to understand health inequity, but intersectionality is rarely discussed in PROM development literature. This study sought to understand and explore PROM researchers’ views about using intersectional approaches to develop fit-for-purpose PROMs. Methodology Semi-structured interviews were conducted online with PROM researchers ( n = 8) who both had and had not previously engaged with intersectionality. Interviews focused on perceived barriers to using intersectionality to inform PROM development and how such barriers could be overcome. With consent, interviews were recorded, transcribed and analysed using a reflexive thematic approach. Results Participants reported limited understanding about intersectionality in the health outcomes field and how it can inform more fit-for-purpose PROM development. Concerns about methodological rigour in PROM development were also cited with participants noting that if existing shortcomings in how PROMs are developed are not recognised, it would be challenging to persuade researchers to change practices. Another challenge raised was reaching certain groups to participate in research, partly due to mistrust of medical research and healthcare professionals. Participants also expressed concerns about financial costs, noting that intersectional approaches may entail bigger budgets and longer study timelines. Participants likewise highlighted the role of the socio-political context in influencing what researchers could feasibly achieve. Interviewees from both groups proposed approaches to address barriers. These included garnering more diverse perspectives from research participants through community-based participatory research and establishing more diverse PROM development teams. They emphasised the value of clearly defining responsibility for instigating change. Participants finally outlined key arguments to help encourage stakeholders to support more intersectional approaches. Conclusions Findings from this exploratory study suggest that despite considerable barriers, some PROM developers view intersectionality as a valuable framework for addressing existing PROM shortcomings. We provide tentative recommendations for encouraging PROM developers to use intersectionality to inform PROM development and measure health outcomes that are more meaningful to patients.