POS0150-PARE WHICH PROBLEMS DO PEOPLE WITH AN RMD FACE AND WHAT ARE THEIR MAIN WISHES FOR RESEARCH AND DEVELOPMENT?
Authors: P. Pennings, P. Borsje, B. Meijer, M. Weijers, J. Otker, R. Visser, G. Willemsen- de Mey
Journal: Annals of the Rheumatic Diseases (2024)

<h3>Background:</h3> What do people with a Rheumatic and Musculoskeletal Disease (RMD) really care about? This question is central to everything we do as the National Association ReumaZorg Nederland (RZN). It gives direction to the projects we want to conduct and participate in. The answer to this question also allows our patient research partners to thoroughly represent the patient perspective during their participation in research projects. In 2018 RZN investigated which problems people with an RMD face and what their main wishes for research and development in the field of rheumatology are. It resulted in a Research Agenda developed for and with people with an RMD. In 2023 RZN wanted to develop a new Research Agenda in order to keep the knowledge of what matters to people with an RMD up to date. An advisory group, including two patient research partners of RZN, was formed to help develop the new Research Agenda. <h3>Objectives:</h3> To update the main problems people with an RMD face anno 2023 and to find out which research and development needs in the field of rheumatology they find most important. <h3>Methods:</h3> The first step in the project was to make an inventory of the main problems faced by people with an RMD and their wishes for research and development, as derived from our own Research Agenda in 2018 and other Research Agendas in the field of rheumatology. Amongst others, the 2019 RheumaMap of EULAR and the 2023 Research Agenda of the Dutch Association for Rheumatology (NVR) were investigated. The problems and needs that emerged were each assigned to a stage of the patient journey. The patient journey represents the journey each patient goes through during their life with an RMD and consists of 8 stages: 1.Before diagnosis 2.Diagnosis 3.Treatment: Medication 4.Treatment: Surgery 5.Complementary treatment 6.Organization of care 7.Desire to have children, pregnancy and infant care 8.Coping with the disease After creating a list of problems and wishes for each stage of the patient journey, two online focus groups were organized in which people with an RMD discussed the list. There was a separate focus group for people with osteoarthritis (N=7) and inflammatory arthritis (N=8). Additional themes were added to the list of problems and wishes. The final list formed the basis for creating two online questionnaires: one for the problems people with an RMD face and one for their wishes for research and development. The questionnaires were distributed on the website and social media channels of RZN and helped to quantitatively measure what is most important to people with an RMD. <h3>Results:</h3> 256 people (94% female) completed the questionnaire on the problems they face with an RMD. Their age ranged from 42-65 years old. Most of the respondents suffered from Osteoarthritis (45%), Rheumatoid Arthritis (38%) and Fibromyalgia (34%), and 72% dealt with comorbidities. 104 people (92% female) completed the questionnaire on the wishes they have for research and development. Their age ranged from 47-76 years old. Most of the respondents suffered from Rheumatoid Arthritis (49%), Osteoarthritis (44%) and Fibromyalgia (26%), and 67% dealt with comorbidities. The most common problems and wishes for research and development were compiled into a Top 5 (Figure 1). Fatigue is a major problem and wish for further research, as it also was in the Research Agenda of RZN in 2018. In addition to the Top 5, the most common problems and wishes were explored in greater depth for each stage of the patient journey and for the three forms of RMDs that were most prevalent amongst the respondents. <h3>Conclusion:</h3> The greatest challenges for people with an RMD lie in stage 8 of the patient journey: Coping with the disease. Fatigue was already an important theme for people in 2018 and seems to have become even more important. People with an RMD experience fatigue as very limiting and there is a great need for research into the cause and management of fatigue. RZN will use this Top 5 of problems and wishes to put focus on research projects that matter most to people with RMDs. <h3>REFERENCES:</h3> <b>NIL.</b> <h3>Acknowledgements:</h3> A special word of gratitude goes out to the patient research partners who contributed to the patient perspective in this project by either being part of the project-group or by sharing their perspectives in the focus groups. Our gratitude also goes out to everyone with an RMD who filled in the questionnaires regarding de problems and wishes of people with an RMD. <h3>Disclosure of Interests:</h3> <b>None declared.</b>