Enhanced education and support needs in rheumatoid arthritis associated interstitial lung disease (RA-ILD) - patient experiences from a multicentre UK survey.

Abstract

Objectives: Interstitial 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.

Methods: There 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.

Results: We 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.

Conclusions: This 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.