New ideas to improve the patient experience in rheumatology
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Rheumatic and musculoskeletal diseases (RMD) profoundly impact daily life, limiting both work ability and participation in everyday activities. At the 2026 annual Congress of EULAR – The European Alliance of Associations for Rheumatology – a series of abstracts examined strategies to deal with fatigue, as well as the lived experiences of caregivers, cost-effectiveness of patient education, and access to rheumatology care. These were part of the Congress dedicated to EULAR Health Professionals in Rheumatology (HPR) – the network of national organisations of HPR across Europe, which serves as platform for collaboration and shared information among the different health professionals working with rheumatology. 

Fatigue is a common and burdensome symptom for people with inflammatory arthritis.1 Tailored physical activity and cognitive behavioural approaches are known to help – and are recommended by EULAR2 – but little is known about the impact of combining the two. COMFI – the COMbined Fatigue Intervention – has been designed to integrate these two approaches.3 At the 2026 EULAR Congress in London, Astrid Damgaard presented findings from a feasibility study involving 29 people with inflammatory arthritis in Denmark and Sweden. The study showed that COMFI could be delivered successfully in both countries. Recruitment was acceptable, adherence rates varied across groups, and delivery fidelity was satisfactory. At 6-month follow-up, the results indicated a tendency toward reduced fatigue, with observed changes meeting the minimal clinically important difference in both countries in all fatigue measurements including the subscales for fatigue severity, impact, and coping. The authors concluded that the approach was feasible to deliver to people with inflammatory arthritis and fatigue. Points to consider for future studies are the unexpected limited use of the individual sessions, support line and involvement of relatives, but this combined support system warrants further investigation of in a larger, randomised controlled trial to evaluate effectiveness and cost-effectiveness.

Being able to self-manage is important for people with an RMD, and patient education can be useful in this regard.4 Results were shared from a trial designed to evaluate the 12-month cost-effectiveness of digital patient education compared to a standard face-to-face approach for 175 patients with newly diagnosed rheumatoid arthritis. The findings showed that the digital approach had lower mean healthcare costs, and slightly greater QALY gains, and the digital intervention was dominant in both adjusted and unadjusted models. Hospital care was the primary driver of cost differences between groups, with lower mean hospital costs in the digital patient education group. Importantly, bootstrap analyses indicated improved outcomes at lower costs – supporting the hypothesis of resource savings for the healthcare system.

A secondary outcome was achieving a minimal important change in self-efficacy score from baseline to 12 months; for this, the intervention was cost-saving, but effects were small and inconsistent across adjusted and unadjusted analyses.

Speaking at the congress, Line Raunsbæk Knudsen said “While confirmation in broader populations is warranted, these findings suggest that structured digital patient education may be integrated into routine care to support efficient resource use without compromising on quality.”

RMD often require sustained support from caregivers to enable daily functioning and disease management. But despite their central role, caregivers experiences and needs are insufficiently explored in rheumatology research – and they are often invisible.5,6 A team in Italy set out to change this by exploring the lived experiences of a group of family members and primary informal caregivers, and identifying needs around targeted supportive interventions. Presenting the work, Valentina Bressan described the qualitative phenomenological study, and the methods used. Overall, 25 caregivers particpated – mostly spouses and cohabiting partners. The onset of illness emerged as a major turning point, with emotional distress and feelings of helplessness and guilt. Many people reported difficult choices and compromises, with 26.7% citing major life changes or sacrifices, and 52% reporting predominantly negative emotions, including sadness, anxiety, fatigue, and emotional overload – often limiting their ability to plan for the future.

The results suggest caregivers experience complex and multifaceted challenges that significantly affect their wellbeing and daily lives, and highlight the need for systematic recognition within rheumatology care pathways. Developing caregiver-focused assessments and tailored psychosocial and educational interventions may improve their wellbeing, enhance patient outcomes, and support more holistic and person-centred care.

There is a global mean delay to diagnosis for axial spondyloarthritis (axSpA) of 7.4 years.7 A team in Canada presented preliminary results from the FASTRAX study – an interdisciplinary model to improve access to rheumatology care and promote early identification. This approach uniquely leverages trained extended scope providers and rheumatology fellows to quickly screen patients with chronic low back pain. To date, 179 patients have completed the screening process across three study sites with a median wait time to assessment of 28 days. Of those, 22.9% were diagnosed with axSpA, and they had a mean time to diagnosis of 12.1 years. Overall, the number needed to screen across the province was five patients with chronic back pain to identify one patient with axSpA, although this varied slightly between sites; however, of note, historically axSpA represents approximately 5% of those with chronic back pain, suggesting a need to screen approximately 20 people to detect one axSpA case.8

Lead author Laura Passalent said “The model is valid and delivers quick access to care, with referral wait times much less than the provincial median. Time to diagnosis remains prolonged, but this is expected to decrease as the model gains awareness amongst referring physicians and matures over time, allowing for more targeted rheumatology referrals.”

Source

Damgaard A, et al. Feasibility of COMFI: a COMbined Fatigue Intervention for people with inflammatory arthritis. Presented at EULAR 2026; OP0140-HPR. Ann Rheum Dis 2026; DOI: 10.1136/annrheumdis-2026-eular.C.122.

Raunsbæk Knudsen L, et al. Cost-effectiveness of digital patient education for newly diagnosed patients with rheumatoid arthritis: An economic evaluation from a randomised controlled trial. Presented at EULAR 2026; OP005-HPR. Ann Rheum Dis 2026; DOI: 10.1136/annrheumdis-2026-eular.C.44.

Bressan V, et al. Caregiving in Inflammatory Arthritis: A Phenomenological Study. Presented at EULAR 2026; OP0138-HPR. Ann Rheum Dis 2026; DOI: 10.1136/annrheumdis-2026-eular.C.157.

Passalent L, et al. An Interdisciplinary Model to Improve Access to Rheumatology Care and Promote Early Identification for Axial Spondyloarthritis: Preliminary Results of the FASTRAX Study. Presented at EULAR 2026; OP0142-HPR. Ann Rheum Dis 2026; DOI: 10.1136/annrheumdis-2026-eular.C.230.

References

1. Dures E, et al. Fatigue in inflammatory arthritis. Best Pract Res Clin Rheumatol 2020;34(2):101526. DOI: 10.1016/j.berh.2020.101526.

2. Dures E, et al. 2023 EULAR recommendations for the management of fatigue in people with inflammatory rheumatic and musculoskeletal diseases. Ann Rheum Dis 2024;83(10):1260–7.

DOI: 10.1136/ard-2023-224514.

3. Skivington K, et al. A new framework for developing and evaluating complex interventions: update of Medical Research Council guidance. Int J Nurs Stud 2024;154:104705. DOI: 10.1016/j.ijnurstu.2024.104705.

4. Knudsen LR, et al. Effectiveness of a novel digital patient education programme to support self-management of early rheumatoid arthritis: a randomized controlled trial. Rheumatology (Oxford) 2024;63(9):2547–56. DOI: 10.1093/rheumatology/keae177.

5. Pile K, et al. Elevating the role of carers in rheumatoid arthritis management in the Asia-Pacific region. Int J Rheum Dis 2020;23(7):898–910. doi:10.1111/1756-185X.13893.

6. Ru J, et al. Burden and depression in caregivers of patients with rheumatoid arthritis in China. Int J Rheum Dis 2019;22(4):608–13. doi:10.1111/1756-185X.13397.

7. Poddubnyy D, et al. Diagnostic delay in patients from the International Map of Axial Spondyloarthritis: geographic, sociodemographic and disease-related factors. Rheumatology (Oxford) 2025;64(4):1873–9. DOI: 10.1093/rheumatology/keae521.

8. Reveille JD, et al. Prevalence of axial spondylarthritis in the United States: estimates from a cross-sectional survey. Arthritis Care Res (Hoboken) 2012;64(6):905–10. DOI: 10.1002/acr.21621.