Background: Chronic airway infection by Pseudomonas aeruginosa significantly impacts the health of people with cystic fibrosis (PwCF), presenting complex treatment challenges.
Research design and methods: To gain insights into PwCF's experiences, a virtual European Patient Advisory Board was convened. Board explored inhaled antibiotic usage, treatment adherence, and associated challenges. Additionally, an online survey was conducted among PwCF to further understand real-life experiences and unmet needs, particularly related to CFTR modulators.
Results: The Advisory Board proved instrumental in collecting valuable real-world perspectives, offering potential avenues for reshaping the care model for complex diseases like cystic fibrosis.
Conclusions: PwCF on CFTR modulators are questioning the necessity of continuing chronic medications and therapies. Physicians are urged to carefully consider the balance between simplifying antibiotic treatment and the risk of clinical deterioration due to bacterial infections when making treatment decisions. Furthermore, the development and global harmonization of diagnostic tools for chronic lung damage and treatment guidelines are crucial to justify the demanding routines that PwCF must endure to manage their condition.The heterogeneity in patient journeys, diagnostic challenges, treatment complexity, and issues related to adherence highlight the need for patient-centric, personalized care that emphasizes improving and maintaining treatment adherence to optimize cystic fibrosis management.
Keywords: Cystic fibrosis; adherence to therapy; inhaled antibiotics; patient advisory board; treatment journey.