Zenodo
Living with cystic fibrosis in the modern era of CFTR modulators: patient and caregiver insights to help inform future healthcare practice
By Konstantina Giannaki, Andrea Mattozzi, Anna Spinou and 1 others.
Abstract
ABSTRACT Introduction: Many people living with cystic fibrosis (CF) have seen notable improvements in their health and quality of life following the introduction of CF transmembrane conductance regulator modulator (CFTRm) therapy. However, pathogens, such as Pseudomonas aeruginosa, can persist in the lungs of individuals receiving CFTRm therapy, which suggests continued need for long-term management with inhaled antibiotics (IAs). To explore patient and caregiver perspectives, Viatris Medical Affairs hosted a virtual advisory board consisting of five adults with CF and two parents of children with CF, from six European countries. Areas covered: The panel discussed pulmonary exacerbations and the use of IAs in the era of CFTRm therapy, priorities and preferences when choosing IA delivery systems, and broader experiences of CF care provision from childhood through to adulthood. Discussions highlighted the need to understand each patient’s priorities and optimize treatment regimens on an individual basis. The panel’s experiences also provided insight into similarities and differences in CF care across Europe and identified several key areas that would benefit from healthcare system changes. Here, we present key discussions and takeaways from the advisory board, providing healthcare professionals with patient/caregiver-led, actionable insights for improving CF care.



