Interstitial lung disease awareness among patients with connective tissue diseases: an international survey

ABSTRACT Objectives Connective tissue diseases (CTDs) and rheumatoid arthritis (RA) share the pulmonary complication of interstitial lung disease (ILD), but little is known about patient awareness of this risk, possibly impacting disease management. We conducted an international cross-sectional online survey of patients with CTDs and RA to understand awareness of the risk of developing ILD. Methods The survey included participants aged ≥18 years with CTDs/RA with and without ILD across Africa and Turkey, Europe, Japan, and the Americas. Results Of 2225 participants, 54% were from Europe, 41% from Japan, and 82% were female. The mean (standard deviation) age of participants was 55 (11.6) years. Most were diagnosed by rheumatologists (82%) and were diagnosed with RA (53%). Only 38% of all participants were aware of the risk of ILD due to CTDs/RA; among these, 91% had CTD/RA only and 9% had CTD/RA-ILD. Self-reported risk awareness varied by region (27% in Japan; 57% in Africa and Turkey) and CTD/RA (25% in Sjögren disease; 70% in systemic sclerosis). Most participants (92%) wanted healthcare professionals (HCPs) to inform them about the risk of other organ manifestations due to CTDs/RA. Key sources of information about CTDs/RA were patient organisations or support group websites (59%) and HCPs (44%). Conclusions These results demonstrate low levels of awareness of the risk of developing ILD in CTDs/RA, which varied across regions and CTDs/RA, and highlight the importance of tailored patient education approaches across regions and CTD subtypes and RA. These findings underscore the urgent need for standardised patient education initiatives.