POS0103-PARE SYSTEMIC RHEUMATIC DISEASES: A RESEARCH PRIORITY HIGHLIGHTED BY RESEARCHERS AND PATIENTS
Authors: M. S. Persson, S. Grzechnik, E. M. Dufva
Journal: Annals of the Rheumatic Diseases (2024)

<h3>Background:</h3> The Swedish Rheumatism Association (SRA) is a patient organisation, but also one of the largest private funders of Swedish rheumatology research. It funds research aiming to prevent and reduce the morbidity of rheumatic and musculoskeletal diseases (RMDs) as well as increase the quality of life of those affected. Besides its general funding call, which encompasses all diagnoses and themes, it has historically had specific calls focused on areas deemed especially important for its members. Previous specific funding calls include pain, osteoarthritis, and rehabilitation for inflammatory rheumatic diseases. With the completion of the most recent call, it was necessary to identify the theme for the next call. <h3>Objectives:</h3> To identify specific research areas that need further research and are a high priority to people living with RMDs. <h3>Methods:</h3> The theme was identified through the involvement of researchers and patients in separate stages. Firstly, the SRA's Research Advisory Board, comprising 14 researchers in the field of RMDs, took part in a modified Delphi exercise to identify areas requiring more research.[1] In a first face-to-face meeting, the Board was asked to suggest topics to be included. In the first voting online round, they graded each topic on a scale of one to five (low to high priority) and motivated their choice. The scores (mean and SD) and motivations were compiled and shared with the Board, who were asked to reflect on their peers' responses and consequently rescore each topic. They were reminded that the aim was to find a consensus. The scores from the second online vote were compiled and the top options were presented back to the Board. In the final step, the highest-ranking options were shared with the members of the SRA who were asked to vote online for their top choice. Each option was justified in a short film by a patient research partner (PRP) experienced in the area. <h3>Results:</h3> Thirteen areas, raised by the Board, were drawn up in the initial meeting. Ten and twelve members of the Board voted in the first and second round, respectively. Following the first round, the highest ranked areas were fatigue (mean 3.6, SD 1.3), systemic diseases (3.2, SD 1.5), ANCA-vasculitis (2.8, SD 1.4), systemic sclerosis (2.7, 1.3), and activities of daily living (2.7, 1.1). In the second round, the priority score increased for fatigue (4.2, SD 0.9). The other high-ranking options were systemic diseases (3.3, SD 1.5), ANCA-vasculitis (2.8, SD 1.2), and systemic sclerosis (2.8, SD 1.1). These four areas were presented back to the Board and it was agreed to take the two highest ranked options to a member vote. 920 members voted, with 546 voting for systemic rheumatic diseases and 374 for fatigue. <h3>Conclusion:</h3> Utilising the expertise of researchers and those living with RMDs, the SRA identified systemic rheumatic diseases as a research priority. A multi-step approach enabled consensus to be reached regarding what areas required more research. The involvement of multiple stakeholders, including people living with RMDs, ensured that the area chosen was important for those affected. <h3>REFERENCES:</h3> [1] Perry, D C et al. "A consensus exercise identifying priorities for research into clinical effectiveness among children's orthopaedic surgeons in the United Kingdom." <i>The bone &amp; joint journal</i> vol. 100-B,5 (2018): 680-684. doi:10.1302/0301-620X.100B5.BJJ-2018-0051. <h3>Acknowledgements:</h3> <b>NIL.</b> <h3>Disclosure of Interests:</h3> <b>None declared.</b>