ArticleRheumatology international2025
Enhanced education and support needs in rheumatoid arthritis associated interstitial lung disease (RA-ILD) - patient experiences from a multicentre UK survey.
Article in Rheumatology international, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.
What it found
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Who cites it
3 citing papers in PubMed.
- Patient reports of evaluations for interstitial lung disease in patients with connective tissue diseases and rheumatoid arthritis: an international survey.Respiratory research · 2026Article
- Optimizing Personalized Care Through Multidisciplinary Management in Rheumatoid Arthritis-Associated Interstitial Lung Disease: A Narrative Review.Journal of personalized medicine · 2026Review
- Two lenses, one disease: the power of joint working in SARD-ILD to 'focus' on the best care.Rheumatology advances in practice · 2026Article
Corrections and comments
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Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectivesInterstitial lung disease (ILD), one of the complications of rheumatoid arthritis (RA) has significant impact on morbidity and mortality. Very little work has been done on patient perceptions, experiences and their needs in RA-ILD. This study aimed to fill that gap in order to better understand and optimise care pathways.
methodsThere are no validated questionnaires, so we piloted and developed one based on Commissioning for Quality in RA Reported Experience Measure (CQRA-PREM). This study was conducted at 6 sites following formal ethics approval. Patients with RA-ILD were identified from routine clinics and databases.
resultsWe included 64 completed valid responses in the final analysis. Median age of the cohort was 75 years; duration of RA was 7 years. Only 13 (20%) participants received detailed information on ILD. Majority reported negative experiences regarding their involvement in care (n = 40, 64%) and needed help from family members or carers (n = 35, 60%). Half were attending respiratory clinics regularly (n = 34, 53%) or having regular PFTs (n = 29, 45%). Only 11 (17%) were able to do moderate exercise or higher. Participants desired more information on ILD, frequent appointments with specialists, earlier referral to specialist centre, and improved communication between specialists.
conclusionsThis study explores patient perspectives in RA-ILD across 6 different UK socioeconomic areas. There are substantial educational needs, disability, and notable gaps in service provisions. Enhanced patient support is needed, and this necessitates more effective integration and utilisation of the multidisciplinary team, including specialist nurses, psychologists, pharmacists, and other allied health professionals.
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