OPALE French Program to Support Patients With Fibrosing Interstitial Lung Diseases (ILD): Optimization of Persistence to Treatment

OBJECTIVES: Since 2015, patients with Idiopathic Pulmonary Fibrosis (IPF), and other progressive fibrosing ILD were eligible to the OPALE program. The aim of the program is to support patients initiating antifibrotic therapy (AF), manage potential adverse effects and promote treatment persistence.

METHODS: Patients initiating AF treatment receive a maximum of 6 calls over 9 months. Patients receive personalized telephone follow-ups with a trained nursing team. During these calls, the OPALE nurse offers support and careful listening to patients and monitors adherence, quality of life, and digestive disorders. Check-ups with a dietitian and a psychologist are also offered. Patients enrolled from October 2015 up to December 31, 2023, were included in this analysis.

RESULTS: Since 2015, 1056 patients enrolled and had an AF treatment initiation call including 960 IPF patients (91%). Of these 1056 patients, 198 (18,8%) are ongoing, 238 (25,6%) withdrew (164 (15,5 %) for AF discontinuation; 74 (6,3%) left the program); 35 (3,3%) died, 1 had lung transplant (LT). The remaining 584 patients (55,3%) terminated the 9-months program and remained on treatment.

The persistence rate at month 9 in OPALE was calculated by excluding ongoing, dead and LT patients (n=234) from the 1056 patients initially included. This results in a patient persistence rate of 71 %.

Recent systematic assessment of digestive disorders suggests that patients who discontinued AF (n=28) reported abdominal pain more often (25%) than those who completed the program and responded to the questionnaire (16%, n=228).

CONCLUSIONS: Regular exchanges between patients and OPALE nurses, coordinated with the medical team resulted in a higher persistence rate at month 9, compared to literature (Belhassen et al., 2021). Moreover, despite the occurrence of adverse reactions, support and listening provided by OPALE nurses participate to maintain a high persistence rate. A patient support program to ILD patients initiating AF may optimize their care management.