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

Dominique Pougheon BertrandA FanchiniP LombrailG RaultA ChansardN Le BretonC FrenodF MilonC Heymes RoyerD SegretainM SilberS TherouanneJ HaesebaertC LlerenaP MichelQ Reynaud
Published in: Orphanet journal of rare diseases (2023)
This conceptual framework, resulting from the participants' experience, will inform the design of a patient-reported experience tool, whose construct will be tested during the next phase of the ExPaParM project to assess its fidelity, intelligibility, and ability to report patient experience of the CF journey.
Keyphrases
  • patient reported
  • cystic fibrosis
  • quality improvement
  • pseudomonas aeruginosa
  • lung function
  • chronic obstructive pulmonary disease
  • air pollution