Background: Interstitial lung disease (ILD) is an infrequent but important organ manifestation in patients with rheumatoid arthritis (RA) associated with high morbidity. Yet, real world data and patients? experiences on management of RA-ILD are scarce.

Methods: An international multidisciplinary expert panel for RA-ILD and patient representatives established an online survey for RA patients, including assessments of current management strategies for patients with RA-ILD.

Results: Of 1132 RA patients from 11 countries 12.4% (n=140) suffered from RA-ILD. Of these were 31% male, 67% had comorbidities (20% cardiac, 33% other pulmonary comorbidities), 61% were ex/current smoker and 8% had familial RA-ILD. The diagnosis of RA-ILD was established by pulmonologists in 32%, by rheumatologists in 42%, together in 22%, and in 4% by others. ILD was identified in 12% before, 66% after and in 21% synchronous with the RA diagnosis. Change in dyspnea and cough since the diagnosis of ILD was heterogeneous (16%/41% without dyspnea/cough, variable in 26%/27%, unchanged in 18%/12%, improved in 14%11%, currently worse in 15%/9% and steadily worsening in 10%/1%). Home monitoring was infrequent (15%). Respiratory hospitalisation rate in the past 5 years was moderate with 22%, mainly for infections, worsening of RA-ILD or acute exacerbations (15%/3%/3%). Treatment patterns for ILDs were heterogeneous, mainly with steroids 48%, MTX 27%, Rituximab 17%, Nintedanib 16%, Leflunomid 11% and Abatacept 10%.

Conclusion: Based on this patient survey, symptoms and management of RA-ILD are heterogenous and treatments are diverse. Future strategies must aim to improve management approaches in this debilitating organ manifestation of RA.