OP0324-PARE NEW DIVERSE OFFERS FOR NEWLY DIAGNOSED WITH RMD
Authors: N. B. Hartz
Journal: Annals of the Rheumatic Diseases (2024)

<h3>Background:</h3> In Denmark we have a population of 5.9 million people and more than 700.000 people are living with rheumatic musculoskeletal diseases (RMDs). More than 60.000 people are diagnosed with RMD every year, and for many people, receiving such a diagnosis is a major life changing experience. In addition to symptoms such as pain, debilitating fatigue and functional impairment, concerns about having contracted a chronic disease fill the newly diagnosed. A life with RMD can often entail profound changes in relation to family life, working life, leisure time, finances and identity, and can cause changes in roles and self-perception. A survey among The Danish Rheumatism Associations members, showed that 48% of all newly diagnosed with RMD experienced a crisis. The Danish Rheumatism Association wished to do something specific for the newly diagnosed and therefore seeked and gratefully received large financial donations (approximately 540.000 Euro) from various funds. These donations made it possible to make a project called "Newly diagnosed – you don't have to stand alone". A patient support program in which we develop specific information and offers for people diagnosed with RMD within the last three years. The project is scheduled to run for 2.5 years. <h3>Objectives:</h3> The aim with this project is to increase newly diagnosed peoples knowledge of their own diagnosis, improve their sense of self-management, make them feel enlightened regarding all aspects of being newly diagnosed and to prevent the experience of loneliness which many newly diagnosed say they feel. <h3>Methods:</h3> To be as relevant as possible in our offers we invited 15 persons who has been diagnosed with RMD within the last three years to be part of a user panel. The user panel contributes with knowledge, needs and wishes regarding all relevant issues about being new with RMD. On that background, we have developed a lot of different materials, videos, podcast, live events on Facebook etc. A project group consisting of 5 employees from the Danish Rheumatism Association are carrying out the ideas and are constantly evolving new measures to meet the needs of newly diagnosed persons with RMD. An Advisory Board (consisting of rheumatologists, professors, nurses, patients, CEO of The Danish Rheumatism Association and many more) is also a part of the project and give advice when needed. <h3>Results:</h3> In 2023 The Danish Rheumatism Association have developed various types of support for newly diagnosed such as: -a podcast series with 5 episodes focusing on 5 different subjects: fatigue, fibromyalgia, medical treatment of arthritis, psychological reactions on having an arthritis diagnosis, pain and how to live with it. -2 animated film, which explain how you get examinated if you might have osteoarthritis or inflammatory rheumatic disease. -4 videos with personal patient stories about the various emotions you can go through when you are newly diagnosed – and how to cope with them. -3 live events on Facebook regarding back pain, medicine and psychological reactions to getting a rheumatic diagnose. -a new theme-site on The Danish Rheumatism Associations website dedicated newly diagnosed. -establishment of "conversation partners" where two newly diagnosed persons are being matched based on their wishes and interests and then talk to each other on the phone. <h3>Conclusion:</h3> This project with dedicated newly diagnosed people in the user panel together with a strong commitment from the employees in the Danish Rheumatism Association backed up by solid donations from various funds is a stepping stone to meet the needs in every phase of a persons life living with RMD. Continously we are involving the user panel and other persons who have been newly diagnosed with RMD to make sure, that what we do is meaningful and essential to them. In future projects we will for sure involve people with RMD in a larger scale than we have done previously because it adds immense value to all projects to align that what we offer, is the same as what the persons with RMD demands. In 2024 and 2025 there will be many more live events, videos, information regarding physical activities, intimacy, mens health etc. This will be elaborated on the EULAR congress. <h3>REFERENCES:</h3> <b>NIL.</b> <h3>Acknowledgements:</h3> <b>NIL.</b> <h3>Disclosure of Interests:</h3> <b>None declared.</b>