Living with cystic fibrosis in the modern era of CFTR modulators: patient and caregiver insights to help inform future healthcare practice

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.

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Publication Details

Journal
Zenodo (CERN European Organization for Nuclear Research)
Published
2026-10-27
DOI
https://doi.org/10.5281/zenodo.23682136
Primary Topic
Cystic Fibrosis Research Advances
Type
article
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article

Living with cystic fibrosis in the modern era of CFTR modulators: patient and caregiver insights to help inform future healthcare practice

Andrea Mattozzi, Valérie Storms, Konstantina Giannaki, Anna Spinou
Zenodo (CERN European Organization for Nuclear Research)
Cystic Fibrosis Research Advances
article

Living with cystic fibrosis in the modern era of CFTR modulators: patient and caregiver insights to help inform future healthcare practice

Andrea Mattozzi, Valérie Storms, Konstantina Giannaki, Anna Spinou
article en

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.

Zenodo (CERN European Organization for Nuclear Research)
Cystic Fibrosis Foundation (US), Cystic Fibrosis Trust (GB), Cystic Fibrosis Research Foundation (IT)
Good health and well-being
Openalex Percentile: Top 12%
Cystic Fibrosis Research Advances
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Living with cystic fibrosis in the modern era of CFTR modulators: patient and caregiver insights to help inform future healthcare practice — Andrea Mattozzi, Valérie Storms, et al. · Zenodo (CERN European Organization for Nuclear Research) (2026) | TGRS Research Map | TGRS