The following is a summary of “Assessing Patient Values and Preferences to Inform the 2023 American College of Rheumatology/American College of Chest Physicians Interstitial Lung Disease Guidelines,” published in the July 2024 issue of Rheumatology by Mirza et al.

Engaging patients is crucial for developing clinical practice guidelines (CPGs).

Researchers conducted a retrospective study gathering patient values and preferences to inform the American College of Rheumatology guidelines on interstitial lung disease (ILD) in individuals with systemic autoimmune rheumatic diseases (SARDs).

They sampled a patient panel and employed a modified content analysis method. The transcripts of the panel discussion were analyzed, identifying the recurring themes and constructing a thematic schema organized into clusters.

The result showed 21 participants (75% women; mean age 53 years, range 33–73) with various SARDs, including systemic sclerosis (38%), Sjogren’s disease (38%), idiopathic inflammatory myopathy (33%), rheumatoid arthritis (24%), and mixed connective tissue disease (10%). Total 10 themes were identified across 4 clusters, including communication, screening and monitoring, treatment goals, and treatment AEs. Patients emphasized the recognition of ILD symptoms, the importance of ILD screening and thorough monitoring, goals focused on survival and enhancing QoL, and readiness to accept treatment risks with effective provider communication. Additionally, the representatives advocated for the priorities at the voting panel, influencing multiple guideline recommendations.

Investigators concluded that patient engagement enriches CPG development, guiding recommendations toward optimal clinical outcomes while prioritizing patient-important outcomes crucial for shared decision-making in managing SARD-associated ILD.

Source: acrjournals.onlinelibrary.wiley.com/doi/10.1002/acr.25346