Abstract Background/Aims Rheumatic and musculoskeletal disorders (RMDs) are among the leading causes of disability, with consequences extending beyond physical symptoms. Patients consistently highlight the impact of these conditions on social engagement as a key priority. Reduced engagement contributes to isolation, poorer mental health, and diminished quality of life. Despite this, no comprehensive measure exists to capture the impact of RMDs on social engagement. We aimed to develop a questionnaire to address this gap. Methods A mixed-methods design informed development of a patient-centred measure of social engagement in RMDs. First, a systematic review of qualitative studies identified key impacts of RMDs on social engagement. A second systematic review examined existing measures used within RMDs, identifying constructs and comparing these with themes from the qualitative literature. Findings from both reviews were presented in deliberative focus groups with people with RMDs and healthcare professionals, for sense-making and prioritisation. Focus group data was analysed thematically, and themes mapped onto the Capability-Opportunity-Motivation-Behaviour (COM-B) model of behaviour, providing the theoretical framework for questionnaire development. Items were generated to reflect COM-B domains and a Think-Aloud study to understand how individuals interpret question items along with acceptability and responder burden. Patient partners contributed throughout study design and questionnaire development. Results Existing quantitative measures focused on frequency, satisfaction, or difficulty of engagement failing to capture the complexity of social participation. Thematic analysis of 30 qualitative studies highlighted barriers and facilitators of social engagement. Within focus groups these themes resonated with 30 people with RMDs and key stakeholders. Participants also described wider contextual factors (e.g.co-morbidities, finances) whilst consistently highlighting current measures do not consider engagement adequately. Themes mapped to COM-B highlighted how capability (e.g., pain, mental load), opportunity (e.g., stigma, competing demands), and motivation (e.g., mood, enjoyment) influence engagement. From this mapping, items were generated using participant language with supporting examples. Results from the Think-Aloud study helped improve clarity, resulting in a measure grounded in lived experience. Conclusion The questionnaire provides a specific tool to measure the impact of RMDs on social engagement. It is designed for use in clinical and research contexts to identify unmet needs and relevant interventions to support engagement. Disclosure A. Maciver: None. G. Macfarlane: None. C. Ghiglieri: None. L. Morton: None. R. Hollick: None.
Maciver et al. (Wed,) studied this question.