Gautiez R, Reix P, Poupon-Bourdy S, Reynaud Q, Fayolle R, Cornec S, Durieu I, Haesebaert J
Respir Med. 2026 Sep;261:109014.
PMID: 42379530
ABSTRACT
Background: Highly effective CFTR modulator therapies have substantially transformed the clinical course of cystic fibrosis (CF), raising questions regarding the organisation and delivery of CF care. However, how CF care models are adapting to this new therapeutic context remains unclear.
Methods: A scoping review was conducted to identify literature published from 2012 onwards addressing organisational changes and stakeholder needs related to CF care in the context of CFTR modulator therapies. We included empirical studies evaluating organisational interventions, opinion or position papers proposing adaptations of care organisation, and studies exploring the needs and perceptions of people with CF, families, and healthcare professionals.
Results: Nineteen publications were included, most originating from North America and Western Europe. The available literature suggests that organisational adaptations in CF care remain at an early stage and are primarily characterised by targeted or incremental changes rather than comprehensive redesign of care models. Telehealth and hybrid follow-up approaches were the most frequently described adaptations, alongside evolving multidisciplinary team roles and increasing interest in personalised care pathways. However, robust empirical evaluations of system-level organisational transformation remain limited.
Conclusions: While highly effective CFTR modulators are reshaping the clinical landscape of CF, evidence supporting large-scale transformation of CF care organisation remains limited. Current findings suggest a gradual evolution toward more flexible and individualised care models, but further longitudinal and system-level evaluations are needed to guide evidence-based adaptation of CF care delivery.
Keywords: CFTR modulator; Care organisation; Care pathway; Cystic fibrosis; Health services; Model of care.
