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

HIGHLIGHTS

• who: D. Pougheon Bertrand from the To our knowledge, our study is the first one to explore the entire CF care pathway from the perspective of patients` and parents` experienceThis approach could be applicable to other rare diseases in order to describe and analyse the pathways from the point of view of patients and their families. The richness of the patient experience collected and analysed shows that it is difficult to reduce it to a generic PREM questionnaire. Indeed, it encompasses domains and sub-domains outside of healthcare institutions and questions life with the disease as a . . .
  

   

  

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