Selecting patient-reported outcome measures of health-related quality of life in adult rheumatology: quality and breadth of coverage

Patient-centered research should assess outcomes important to patients and include patient-reported outcome measures (PROMs) to assess health-related quality of life (HRQOL) domains. Using a well-known HRQOL framework (World Health Organization QOL, or WHOQOL), we reviewed established PROMs used with adults with different types of arthritis to evaluate their HRQOL domain coverage and psychometric evidence to help PROM users select measures and determine whether other measures should be validated and/or developed. Nineteen PROMs and 92 corresponding articles were reviewed to determine which HRQOL domains were assessed. To support a streamlined but rigorous review, we used a rating system based on criteria established in part through existing rubrics (e.g., OMERACT COSMIN). Psychometric properties were rated on a scale from 1 to 18, where 18 was strongest. We examined the intersection between level of domain coverage and extent of psychometric support. Measures most commonly assessed physical health and level of independence, while fewer assessed social relations, environment, and psychological health. No measures assessed spirituality and religion, which may be relevant depending on intended use. PROMs with higher psychometric evidence tended to assess a broader range of HRQOL domains. Rubric scores ranged from 3 to 16, with an average of 9.3. Prominent and psychometrically sound PROMs are available that cover many of the WHOQOL domains. While gaps exist in the domain of spirituality, future work should focus on refining optimal use of existing PROMs relevant for arthritis versus developing new measures. We provide guidance on selecting PROMs, to that end.