OA34 The contributions of Patient and Public Involvement and Engagement groups to the conduct of a scoping review of non-pharmacological interventions for reducing fatigue in children and young people with musculoskeletal conditions

Abstract

Background/Aims Fatigue is an important symptom for people of all ages with musculoskeletal (MSK) conditions. This includes the 234,000 children and young people (CYP) in England and Scotland currently living with conditions such as juvenile inflammatory arthritis, myositis and lupus. This scoping review aimed to generate evidence to design or adapt non-pharmacological MSK-fatigue support across the lifespan, by creating an overview of current knowledge and highlighting gaps in the literature. Methods The protocol and search strategy were developed in accordance with the Joanna Briggs Institute (JBI) methodology for scoping reviews, in collaboration with a Patient and Public Involvement and Engagement (PPIE) group consisting of CYP aged 13-22 years, with lived experience of MSK-related fatigue (N = 12). This group was hosted online and focused on discussion of non-pharmacological interventions either offered to or investigated by participants. Following initial data extraction, an in-person PPIE workshop (N = 7) was held to discuss the initial findings. The data extraction template was then revised and amended by the research team in response to PPIE input. A further online PPIE workshop (N = 10) was held to reflect on the scoping review findings, including CYPs’ views about its relevance to their health and how information regarding non-pharmacological interventions for fatigue should be shared. Results CYP contributed to and reviewed key search terms and inclusion criteria, ensuring relevance of the review to their lived experience of fatigue. By discussing the non-pharmacological treatments they had been offered or sought out, CYP broadened the researchers’ understanding of contextual factors relating to intervention success and acceptability. Limited evidence regarding non-pharmacological fatigue interventions for CYP with MSK conditions was found and most interventions were based on physical activity. Following initial data extraction, participants highlighted that information such as the level and mode of support, qualifications of the facilitator and the appropriateness of the setting were not captured, which they considered important factors in determining acceptability. They also noted the lack of research regarding nutritional approaches or complementary medicine. When reviewing the final data, participants emphasised significant difficulties in locating and researching treatments when actively experiencing fatigue, and therefore the need for information to be easily available from reliable sources. The trustworthiness of guidance was considered highly important in ensuring physical safety when engaging with interventions, whereas the accessibility and age-appropriate nature of the intervention was deemed key for ensuring psychological safety. Conclusion The lived experience of the CYP PPIE groups added valuable insight into the nature and challenges of MSK-fatigue. Their input had a significant impact on the search strategy and data extraction process and will be sought again to ensure that dissemination of the review findings is relevant and accessible for patients, demonstrating the benefit of this approach in the conduct of scoping reviews. Disclosure K. Fishpool: None. G. Young: None. C. Ciurtin: None. F. Cramp: None. B. Farisogullari: None. G.J. Macfarlane: None. P.M. Machado: Consultancies; Abbvie, BMS, Celgene, Eli Lilly, Janssen, MSD, Novartis, Pfizer, Roche, UCB. J. Pearson: None. E. Santos: None. E. Dures: None.