Co-producing an Accessible Quality of Life Measure for use in community mental health services

Background: The Recovering Quality of Life (ReQoL) measure is a patient-reported outcome measure (PROM) mandated for community mental health services in England. ReQoL is used to assess recovery-focused quality of life. Mental health clinicians have raised concerns that ReQoL is not accessible to adults with learning disabilities (LD), a group frequently excluded from research, including the development of PROMs. This paper describes the steps that have been taken to co-produce a PROM that is accessible to adults with LD who access community mental health services.

 

Approach: Grounded in the principles of co-production, this study employed a mixed-methods approach to inform the adaptation strategy. We conducted two online workshops with academics, healthcare professionals, an expert on developing ‘easy read’ documents, and patient and public involvement advisors to navigate key conceptual and methodological challenges. These findings were supplemented by an online survey distributed to a wider professional audience to gather further feedback.

 

Results: Focus group attendees supported developing an adapted ReQoL and recommended creating a single, universally ‘accessible’ version of ReQoL, rather than a narrowly defined ‘LD version’. It was felt that this approach would promote inclusivity and avoid stigma. The experts emphasized the importance of including people with LD, autism, neurodiversity, cognitive problems, and low literacy levels in the research.

 

 Although some participants were willing to sacrifice comparability, the majority agreed that the adapted ReQoL must retain conceptual fidelity—and hence comparability—with the original ReQoL to facilitate adoption in community mental health and other services. Participants felt that the adaptation should maximize accessibility (e.g., improved layout) and engagement across groups, whilst taking differing needs into consideration. Simplification (e.g., by reducing the number of response options), co-production, and digital adaptability were viewed as key enablers of inclusivity without compromising validity. Finally, the experts advised balancing psychometric rigour with pragmatism to avoid a burdensome design (e.g., allowing flexibility in the timeframe for test–retest reliability assessment).

 

Implications: These findings present a clear framework for adapting an existing PROM to enhance its inclusivity and broaden its applicability. While grounded in the UK context, the lessons on co-production, stakeholder engagement, and strategic adaptation are highly transferable, illustrating how to create tools that genuinely support integrated, person-centred care for all. The next step is to draft an adapted ReQoL that can be pre-tested and assessed for accessibility in diverse populations before it is validated in a survey.

 

To date, PROM adaptations are predominantly undertaken for single groups. While involving a wide range of groups may pose additional challenges, a successful adaptation will result in an accessible PROM that can assess outcomes for a broader population of community mental health service users. These findings offer valuable insights for researchers and clinicians on balancing the demands of psychometric rigour with the practical needs of diverse populations and community-based services.