AB1694-PARE RHEUMATISM AND I: SELF MANAGEMENT (REIS). CO-DESIGNING AND EXECUTING A SURVEY INTO DEPLOYED SELF MANAGEMENT STRATEGIES WITH AND AMONG PATIENTS WITH RHEUMATIC DISEASES IN THE NETHERLANDS
Authors: M. R. Schriemer, R. Wolkorte, E. Te Braake, Y. Schriemer, C. Grünloh
Journal: Annals of the Rheumatic Diseases (2024)

<h3>Background:</h3> Due to patient engagement in research, patients play a larger role in research carried out into their diseases. In Citizen science for Health, lived experience is a starting point for setting up research and scientifically support the research questions from patients. In our REIS study we collaborated with several groups, representing patient engagement (Sint Maartenskliniek), citizen science for health (University of Twente) and human centered design (Roessingh Research and Development). <h3>Objectives:</h3> REIS ('journey') stands for Reuma en Ik: Self-management (Rheumatism and I: self-management). This project investigates self-management strategies deployed by people with rheumatic conditions. Self-management can entail many things and universal pathways to guide patients towards self-management options are lacking. So is information about their success rate and the impact as experienced by patients. Through this study we wanted to address this. <h3>Methods:</h3> The group of PRPs (n=16) consisted primarily of persons (n=14) previously involved in projects at the University of Twente and Sint Maartenskliniek. PRP's were involved in every stage of the study, meeting primarily online. Decisions in the project were based on mutual discussions. Discussions were meetings with between 3-5 researchers and 4-7 PRPs, lasting approx. 90 minutes each. Topics were (1) research topic, (2) what self-management entails, (3) study design, (4) data management plan, (5) method for data collection, (6) dissemination of the survey, (7) data analyses of open-ended text, (8) dissemination of the results and follow up. After each meeting, a summary and outlook were written by the researchers and shared for feedback with the PRPs. Data on self-management was collected through an online survey (Qualtrics) disseminated through patient communities. Questions addressed were the type of self-management deployed, whether experiences were primarily positive or negative, facilitators and barriers encountered and what had initialized exploring this strategy. All data was analysed in Atlas.ti version 23. Analysis and categorization of data was done iteratively, allowing for changes due to the feedback of PRPs. <h3>Results:</h3> Regarding the PRPs: They regarded a study into self-management as highly relevant. The PRPs thought an online survey was most appropriate to collect data, so anyone can participate regardless a current medical treatment. They suggested open ended answering for the strategies, to increase engagement. They also suggested disseminating the survey trough patient communities. With regard to the data analyses, they assessed which scientific classification of self-management suited the reported strategies best. For dissemination of the results, they suggested patient communities, health care professionals and the scientific communities. With regard to the follow up, they suggested making sure the anonymised data is accessible for all people with rheumatic disease and health professionals in rheumatology. Outcome-related early results from the survey: 250 persons completed the questionnaire. The 250 respondents reported 1305 strategies. By over 50 (n= 699) percent of those strategies named, in-depth questions were answered. The strategies are currently analysed in depth and categorized based on what strategies were used and which dimensions of 'positive health', as preferred by PRPs. <h3>Conclusion:</h3> Thanks to patient involvement and citizen science for health, patients have can help design and execute studies that are relevant for their lives. In this project we designed and collected a study into self-management strategies of people with rheumatic diseases. With this study, PRPs and researchers contributed to developing an inventory of self-management strategies open to consultation for all patients. <h3>REFERENCES:</h3> [1] Damgaard AJ, Primdahl J, Esbensen BA, Latocha KM, Bremander A. Self-management support needs of patients with inflammatory arthritis and the content of self-management interventions: a scoping review. Semin Arthritis Rheum. 2023 Jun;60:152203. doi: 10.1016/j.semarthrit.2023.152203. Epub 2023 Apr 6. PMID: 37068398. <b>Table 1.</b> <h3>Acknowledgements:</h3> I would like to acknowledge all patients of the REIS working group and Reuma Nederland for funding. <h3>Disclosure of Interests:</h3> <b>None declared.</b>