학술논문
"Il faut continuer à poser des questions" patient reported outcome measures in cystic fibrosis: An anthropological perspective.
Document Type
Article
Author
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
Source
Subject
*PATIENT reported outcome measures
*CYSTIC fibrosis
*ALLIED health personnel
*QUALITY of life
*ADULTS
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Language
ISSN
1569-1993
Abstract
• 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 cystic fibrosis (pwCF) are central in the development of patient-led assessment tools. Qualitative analysis of a frequently used CF-specific patient-reported outcome measure (PROM) sought patient recommendations for development of a new quality of life (QoL) tool. We performed an inventory of PROMs, symptom-report and QoL tools used in clinical trials within the European Cystic Fibrosis Society Clinical Trial Network (ECFS-CTN) and in routine clinical practice among Cystic Fibrosis Europe and ECFS members. A qualitative study using cognitive interviews with pwCF and their caregivers reviewed the Cystic Fibrosis Questionnaire (CFQ), the French initial form of the Cystic Fibrosis Questionnaire-Revised (CFQ-R). Survey results from 33 countries revealed over 70 tools used in routine clinical practice, utilized by clinical specialists (n=124), pwCF/parents/carers (n=49) and other allied health professionals (n=60). The CFQ-R was the main PROM used in clinical trials. The qualitative study enrolled 99 pwCF, 6 to 11 years (n=31); 12 to 18 years (n=38); >18 years (n=30) and 26 parents. Inductive thematic analysis based on the CFQ, revealed 19 key themes. Themes common across all cohorts included burden of treatment, impact of disease on day-to-day life, relationships/family, stress/mood, and nutrition. Themes unique to individual groups included, treatment when not symptomatic for the paediatric group; education/studies and planning for the future for adolescents, impact of anxiety and depression on day-to-day life for adults, and for parents, questions addressing anxiety and their role as carers. Patient-centeredness is paramount in development of an up-to-date PROM in the era of novel therapies. [ABSTRACT FROM AUTHOR]