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Background: Rheumatic and musculoskeletal diseases (RMDs) significantly impact the lives of people, particularly between the ages of 30-45. A phase often defined by pivotal life decisions regarding work, living situation, relationships, children and spending of spare time. Balancing these demands while managing an RMD poses unique challenges. In 2024 we, the National Association ReumaZorg Nederland (RZN), conducted research to better understand the specific difficulties faced by people with RMDs aged 30-45. We also wanted to explore how we, as a national patientorganisation can better support this specific group.
Objectives: This project provided insight on:
the challenges of people with an RMD aged 30-45.
how RZN can better accommodate to the needs of people with an RMD aged 30-45.
Methods: We used the RMD patient journey for this project. This patient journey represents the journey each patient goes through during their life with an RMD and consists of 8 stages:
Before diagnosis
Diagnosis
Treatment: medication
Treatment: surgery
Treatment: complementary
Organisation of care
Desire to have children, pregnancy and breastfeeding
Coping with an RMD
Through a combination of a qualitative method (focus group) and quantitative analysis (questionnaire), the study explored which challenges people aged 30-45 with an RMD encounter and what their needs for support from our patient organisation are. By framing the research within the patient journey, we ensured that RMDs were not only highlighted from the medical angle, but from a broader perspective that also focuses on the impact of living with an RMD.
People with an RMD aged 30-45 often feel constrained by fatigue and face significant uncertainty. This includes uncertainty about their diagnosis (Where do my symptoms come from?) and the future (How can I picture the rest of my life, my job, my future partner or possible parenthood?). The unpredictable nature of RMDs, with good days and bad days, poses challenges for maintaining an active life and managing daily responsibilities, such as taking care of household tasks.
What can we do better for people with RMDs aged 30-45?
Our outreach during this project to people with RMDs between 30-45 revealed a surprisingly high response rate, with some participants engaging with our patientorganisation for the first time and expressing feelings of gratitude for being listened to.
Quote: “I thought a patientorganisation was only for old people with a disease.”
There are 4 areas of focus for our patientorganisation:
Awareness: People with RMDs from 30 to 45 want clear information on topics like ‘work’ (also for employers), ‘pregnancy and family planning’, ‘diet’, ‘affordable and accessible supervised exercise options’ and ‘complementary treatments’. Guidance on managing loss of income as a result of having an RMD and high medical expenses is also critical.
Coping skills: Learning to navigate the uncertainty and unpredictability of RMDs is a priority for people with RMDs from 30 to 45, alongside regaining control and developing skills for self-management.
Social support: In the RMD age-group 30-45 a need exists for companionship among fellow people with RMDs. This can be supported online or on location, preferably on a local level.
Advocacy: Within the 30-45 RMD age-group greater attention to people with fibromyalgia is essential, as this type of RMD lacks effective treatment and is often misunderstood.
Conclusion: The greatest challenges for people with an RMD aged 30-45 are in stage 8 of the patient journey: Coping with an RMD. Especially ‘fatigue’, ‘uncertainty’ and ‘unpredictability’ are core challenges. People with an RMD aged 30-45 don’t realize what our patientorganisation can bring them. This target group is too busy surviving each day with an RMD, to be able to seek out help. Despite this there is a need for support, in which our patientorganisation can play a major role.
REFERENCES: NIL.
Acknowledgements: The National Association ReumaZorg Nederland would like to thank all people with RMDs between 30-45 years who participated in the focusgroup - and/or who filled in the questionnaire for this study.
Disclosure of Interests: None declared.
© The Authors 2025. This abstract is an open access article published in Annals of Rheumatic Diseases under the CC BY-NC-ND license (