Provision of information on transplantation to cystic fibrosis patients and their relatives: Overview of French practices and recommendations.
Adult
Aged
Communication
Cystic Fibrosis
/ epidemiology
Family
Female
France
/ epidemiology
Humans
Lung Transplantation
/ education
Male
Middle Aged
Patient Education as Topic
/ statistics & numerical data
Practice Patterns, Physicians'
/ statistics & numerical data
Professional-Family Relations
Retrospective Studies
Surveys and Questionnaires
Cystic fibrosis
Patient information
Transplantation
Journal
Respiratory medicine and research
ISSN: 2590-0412
Titre abrégé: Respir Med Res
Pays: France
ID NLM: 101746324
Informations de publication
Date de publication:
Mar 2020
Mar 2020
Historique:
received:
25
03
2019
revised:
17
12
2019
accepted:
31
12
2019
pubmed:
4
6
2020
medline:
3
6
2021
entrez:
4
6
2020
Statut:
ppublish
Résumé
How health-care professionals inform cystic fibrosis patients and their relatives about transplantation is not well known. Such information may not be provided in a timely or satisfactory manner. We conducted a survey about patient information practices among professionals from all French cystic fibrosis centers and transplant centers, to determine how they might be improved. This was a national, retrospective, multicenter, descriptive assessment of practices involving health-care professionals, transplant recipients and their relatives, and peer patients who are themselves transplant recipients. Questionnaires were developed by the French working group on cystic fibrosis patient education (GETHEM: Groupe éducation thérapeutique et mucoviscidose). At the end of the questionnaires, respondents were invited to suggest ways to improve the current process. In all, 216 professionals, 55 patients, 30 relatives of these patients, and 17 peer patients responded to the questionnaires, which addressed topics in chronological order, from neonatal screening or later diagnosis of the illness to the time of the transplant, if one was performed. Study findings have allowed us to draft nine recommendations for professionals to improve patient information practices. A booklet now being prepared aims to facilitate the process for professionals, and e-learning modules are also forthcoming.
Sections du résumé
BACKGROUND
BACKGROUND
How health-care professionals inform cystic fibrosis patients and their relatives about transplantation is not well known. Such information may not be provided in a timely or satisfactory manner. We conducted a survey about patient information practices among professionals from all French cystic fibrosis centers and transplant centers, to determine how they might be improved.
METHODS
METHODS
This was a national, retrospective, multicenter, descriptive assessment of practices involving health-care professionals, transplant recipients and their relatives, and peer patients who are themselves transplant recipients. Questionnaires were developed by the French working group on cystic fibrosis patient education (GETHEM: Groupe éducation thérapeutique et mucoviscidose). At the end of the questionnaires, respondents were invited to suggest ways to improve the current process.
RESULTS
RESULTS
In all, 216 professionals, 55 patients, 30 relatives of these patients, and 17 peer patients responded to the questionnaires, which addressed topics in chronological order, from neonatal screening or later diagnosis of the illness to the time of the transplant, if one was performed.
CONCLUSIONS
CONCLUSIONS
Study findings have allowed us to draft nine recommendations for professionals to improve patient information practices. A booklet now being prepared aims to facilitate the process for professionals, and e-learning modules are also forthcoming.
Identifiants
pubmed: 32492649
pii: S2590-0412(20)30002-7
doi: 10.1016/j.resmer.2019.12.002
pii:
doi:
Types de publication
Journal Article
Multicenter Study
Langues
eng
Sous-ensembles de citation
IM
Pagination
79-88Informations de copyright
Copyright © 2020. Published by Elsevier Masson SAS.