Practice Gaps and Variations in the Pharmacological Management of Interstitial Lung Disease (ILD): Real-World Insights From the AccessILD Registry in the UK

OBJECTIVES: Electronic Health Record (EHR) data on the pharmacological management of different Interstitial Lung Disease (ILD) types is not routinely available and the difficulty in distinguishing and characterising different ILD types introduces further discrepancies in EHR coded data. We established a fully remote registry to address EHR data limitations in studying clinical practice variations in ILD, by allowing real-time data sharing through integration of EHR and electronic Patient Reported Outcomes (ePRO) data.

METHODS: Potential participants are identified using primary care provider EHR and invited by text to join the AccessILD (AILD) registry via a study portal weblink. Enrolled patients were sent an ePRO survey to trace their pharmacological treatment pathways since diagnosis and responses were integrated with patients’ existing EHRs.

RESULTS: 355 patients from 144 UK primary care practices joined AILD and 249 completed the ePRO survey; 36% have Idiopathic Pulmonary Fibrosis (IPF) and 64% have non-IPF ILD, including “systemic disease with lung involvement” (21%), “occupational/environmental” (6%), “drug-induced” (3%) and “other” (34%) ILD types. Average patient age is 69.2 years and average time since diagnosis is ±7.8 years. 62% of patients are treated at a “non-specialist hospital”, 15% at a “specialist center” and 8% at a “GP practice”. 61% of patients don’t take any medication for ILD, 15% take immunosuppressants, 13% antifibrotics and 21% oral corticosteroids, while 7% of IPF patients report concomitant use of corticosteroid and antifibrotic therapy. Antifibrotics are primarily taken by IPF patients (88%), although use in “drug-induced” (3%) and “other” ILDs (9%) is also reported.

CONCLUSIONS: Discrepancies exist between different care settings in the pharmacological management pathways for ILD. As antifibrotics are being deployed among an increasingly broader ILD patient population, remote, interactive registries in ILD can be particularly useful in capturing and bridging evidence-practice gaps at the population-level and improving our understanding of treatment pathways within ILD patient populations.