Significant unmet needs among people with rheumatoid arthritis-associated interstitial lung disease (RA-ILD) have been identified in a recent survey, with most patients reporting limited understanding of their condition and clear gaps in the services available to them.

RA-ILD is a severe extra-articular manifestation of RA, contributing substantially to morbidity and mortality. While patient perspectives in idiopathic pulmonary fibrosis and other connective tissue disease ILDs have been explored, little is known about how patients with RA-ILD perceive their condition or the care they receive.

To address this evidence gap, a semi-qualitative, questionnaire-based study was conducted across six NHS rheumatology centres in England, representing varied geographical and socioeconomic populations.

Of 121 patients approached, 64 provided valid responses. Participants had a median age of 75 years, with 56% being female. Most had established RA (89%) and ILD of less than five years’ duration (86%). All had high-resolution computed tomography-confirmed ILD and met the 2010 ACR/EULAR criteria for RA.

Data captured experiences related to information provision, care coordination, physical impact, shared decision-making and recommendations for service improvement.

Inconsistent care and limited specialist access in RA-ILD

Only 22% of respondents reported receiving detailed information about ILD, while 32% experienced negative involvement in management, and just 35% felt part of shared decision-making. Help from family or carers was common and needed by 57% of respondents.

ILD greatly affected quality of life: 52% reported their lung disease impacted them as much as joint symptoms. Physical limitations were substantial, and only 17% could engage in moderate exercise, while 20% were housebound.

Treatment approaches for RA-ILD varied, with many respondents reporting no improvement after medication adjustments. Access to respiratory follow-up and pulmonary function testing was inconsistent, indicating wide variation in monitoring practices.

Qualitative responses highlighted dissatisfaction with remote consultations, limited access to specialist support, poor communication between rheumatology and respiratory teams, and a desire for earlier referral to specialist centres, improved multidisciplinary input and more practical support resources.

Coordinated care pathways

The researchers noted a small sample size, potential selection bias and limitations inherent to questionnaire studies. As no validated RA-ILD experience measure exists, a new tool was developed for the study, and although content validity was addressed, reliability testing was not performed.

The findings underscored the need for early education, structured monitoring, supportive care planning and coordinated respiratory–rheumatology pathways to meet the complex needs of patients with RA-ILD and improve care across the NHS.

The researchers further emphasised the importance of developing validated patient-reported experience measures, enhancing educational resources, clarifying care pathways, strengthening multidisciplinary collaboration and increasing patient involvement in care decisions.

Reference
Dubey S et al. Enhanced education and support needs in rheumatoid arthritis associated interstitial lung disease (RA-ILD) – patient experiences from a multicentre UK survey. Rheumatol Int 2025;45:237.