Understanding intentional and non-intentional non-adherence in Pulmonary Fibrosis to antifibrotic treatment: a patient-led multivariate analysis

Pulmonary Fibrosis (PF), an incurable lung disease, affects 400,000 Europeans yearly, with 80,000 annual deaths. PF patients, face a 3–7 year life expectancy post-diagnosis. Understanding medication adherence among PF patients holds significant potential for advancing clinical practices and healthcare guidelines, thereby fostering improved therapeutic outcomes and overall well-being. Our study sought to evaluate both the existence of non-adherence and the factors that influence it. To assess this, the European Pulmonary Fibrosis Federation, with researchers and patient advocates, conducted an online survey on 344 PF patients from 21 countries (August 2023–January 2024). Questions probed non-adherence factors, perceptions of disease and treatment burden. We used a special validated tool to better identify the issues with non-adherence - the Basel Assessment of Adherence to Immunosuppressive Medications Scale (BAASIS). 35% of responding patients reported unintentionally and/or intentionally missing a dose of their medicine monthly, with an average of 3.7 doses being missed per month per patient. Forgetfulness was the primary reason for intentionally omitted doses. Notably, 1 in 6 patients intentionally skipped doses of medicine due to treatment side effects, despite recognizing its crucial role. Despite being aware of the importance of treatment, intentional non-adherence persists in a significant subset of PF patients. Identifying these patients is crucial for early monitoring and person-centered interventions. Proactive side-effect management emerged as vital, emphasizing personalized support for treatment effectiveness in PF.