A conceptual framework to develop a patient-reported experience questionnaire on the cystic fibrosis journey in France: the ExPaParM collaborative study

A conceptual framework to develop a patient-reported experience questionnaire on the cystic fibrosis journey in France: the ExPaParM collaborative study

Abstract Background The objective of the study was to elaborate a conceptual framework related to the domains of patient experience along the cystic fibrosis (CF) journey from the patients and parents of children with CF to inform the design of a patient-reported experience questionnaire. Method A c...

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Bibliographic Details
Main Authors: D. Pougheon Bertrand, A. Fanchini, P. Lombrail, G. Rault, A. Chansard, N. Le Breton, C. Frenod, F. Milon, C. Heymes Royer, D. Segretain, M. Silber, S. Therouanne, J. Haesebaert, C. Llerena, P. Michel, Q. Reynaud
Format: Article
Language:English
Published: BMC 2023-02-01
Series:Orphanet Journal of Rare Diseases
Subjects:
Collaborative research
Health service research
Patient experience
Patient reported experience measures
Cystic fibrosis care
Quality improvement
Online Access:https://doi.org/10.1186/s13023-023-02640-6

Internet

https://doi.org/10.1186/s13023-023-02640-6

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