“Il faut continuer à poser des questions” patient reported outcome measures in cystic fibrosis: An anthropological perspective

•Qualitative research approaches capture patient life experience.•More PROMS are required to reflect evaluation of disease status.•Patient-centeredness is paramount in the development of an up-to-date PROM.•New CF-specific PROMs are needed in the era of highly effective CFTR modulators. People with...

Ausführliche Beschreibung

Bibliographische Detailangaben

Veröffentlicht in:	Journal of cystic fibrosis 2021-11, Vol.20 (6), p.e108-e113
Hauptverfasser:	Coucke, Rosa, Chansard, Audrey, Bontemps, Véronique, Grenet, Dominique, Hubert, Dominique, Martin, Clémence, Lammertyn, Elise, Bardin, Emmanuelle, Bulteel, Veerle, Chedevergne, Frédérique, Bourgeois, Muriel Le, Burgel, Pierre-Régis, Honore, Isabelle, de Keyser, Hilde, Kirszenbaum, Maya, de Carli, Paola, Sermet-Gaudelus, Isabelle, Hayes, Kate, Bend, Jutta, Bresnihan, Claire, Calvert, Anne, Fonts, Anna, Hager, Andreas, Hautrive, Maxime, Havermans, Trudy, Hofmann, Diana
Format:	Artikel
Sprache:	eng
Schlagworte:	Adolescent Adult Cross-Sectional Studies Cystic fibrosis Cystic Fibrosis - psychology Cystic Fibrosis - therapy Europe Female Humans Male Patient Reported Outcome Measures Patient-Centered Care Patient-led research Quality of Life Surveys and Questionnaires
Online-Zugang:	Volltext
Tags:	Tag hinzufügen Keine Tags, Fügen Sie den ersten Tag hinzu!