Standards of care and educational gaps in adult cystic fibrosis units: a European Respiratory Society survey.

Autor:	Felipe Montiel A; Department of Respiratory Medicine (Adult Cystic Fibrosis Unit), Vall d'Hebron University Hospital, Vall d'Hebron Research Institute (VHIR), Universitat Autònoma de Barcelona, Barcelona, Spain., Álvarez Fernández A; Department of Respiratory Medicine (Adult Cystic Fibrosis Unit), Vall d'Hebron University Hospital, Vall d'Hebron Research Institute (VHIR), Universitat Autònoma de Barcelona, Barcelona, Spain.; CIBER de Enfermedades Respiratorias, Instituto de Salud Carlos III, Madrid, Spain., Culebras Amigo M; Department of Respiratory Medicine (Adult Cystic Fibrosis Unit), Vall d'Hebron University Hospital, Vall d'Hebron Research Institute (VHIR), Universitat Autònoma de Barcelona, Barcelona, Spain., Blasi F; Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico, Internal Medicine Department, Respiratory Unit and Cystic Fibrosis Adult Center, Milan, Italy.; Department of Pathophysiology and Transplantation, Università degli Studi di Milano, Milan, Italy., Gramegna A; Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico, Internal Medicine Department, Respiratory Unit and Cystic Fibrosis Adult Center, Milan, Italy.; Department of Pathophysiology and Transplantation, Università degli Studi di Milano, Milan, Italy., Elborn S; Medicine and Faculty of Medicine, Health and Life Sciences at Queen's University and Imperial College London, London, UK., Horsley A; Division of Infection, Immunity and Respiratory Medicine and Adult CF Centre, Faculty of Biology Medicine and Health, University of Manchester, Manchester, UK., Madge S; Royal Brompton and Harefield NHS Foundation Trust, London, UK., Stolz D; Clinic of Respiratory Medicine and Pulmonary Cell Research, University Hospital Basel, Basel, Switzerland., Tabin N; Education Department, European Respiratory Society, Lausanne, Switzerland., Pannetier C; European Respiratory Society, Lausanne, Switzerland., Polverino E; Department of Respiratory Medicine (Adult Cystic Fibrosis Unit), Vall d'Hebron University Hospital, Vall d'Hebron Research Institute (VHIR), Universitat Autònoma de Barcelona, Barcelona, Spain.; CIBER de Enfermedades Respiratorias, Instituto de Salud Carlos III, Madrid, Spain.
Jazyk:	angličtina
Zdroj:	ERJ open research [ERJ Open Res] 2024 May 13; Vol. 10 (3). Date of Electronic Publication: 2024 May 13 (Print Publication: 2024).
DOI:	10.1183/23120541.00065-2024
Abstrakt:	Background: Significant progress in the field of cystic fibrosis (CF) has substantially extended the life expectancy of patients with CF (pwCF). Consequently, the population of adult pwCF has outnumbered paediatric patients in most developed countries. Ageing is a new factor that can contribute to disease complexity and can require adaptation of CF units. Therefore, the necessity for standardised, specialised and multidisciplinary care is imperative. Concerns arise regarding the adequacy of current healthcare, therapeutic and educational offerings. Methods: To address these concerns, a multinational survey was conducted to assess the current state of care in specialised multidisciplinary adult and paediatric CF units and identify areas for improvement. Responses were collected from 44 centres providing regular care to CF patients. Results: The survey unveiled considerable disparities in the availability of critical resources, including diagnostic access, supplementary testing, treatment modalities, transplant and transition programmes, and healthcare professionals' training. Conclusion: This study underscores the urgent need to standardise care across these centres in order to minimise disparities in terms of available resources and training with a particular emphasis on adult pwCF who are becoming more numerous and showing different needs with ageing. The changing landscape of CF in adulthood will require constant monitoring to ensure proper adaptation of the current model of care. Competing Interests: Conflict of interest: N. Tabin and C. Pannetier are employees of the European Respiratory Society. The other authors have nothing to disclose. (Copyright ©The authors 2024.)
Databáze:	MEDLINE
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