A conceptual framework to develop a patient-reported experience questionnaire on the cystic fibrosis journey in France: the ExPaParM collaborative study
Abstract Background The objective of the study was to elaborate a conceptual framework related to the domains of patient experience along the cystic fibrosis (CF) journey from the patients and parents of children with CF to inform the design of a patient-reported experience questionnaire. Method A c...
| Main Authors: | , , , , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2023-02-01
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| Series: | Orphanet Journal of Rare Diseases |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s13023-023-02640-6 |
| _version_ | 1797863513904906240 |
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| author | D. Pougheon Bertrand A. Fanchini P. Lombrail G. Rault A. Chansard N. Le Breton C. Frenod F. Milon C. Heymes Royer D. Segretain M. Silber S. Therouanne J. Haesebaert C. Llerena P. Michel Q. Reynaud |
| author_facet | D. Pougheon Bertrand A. Fanchini P. Lombrail G. Rault A. Chansard N. Le Breton C. Frenod F. Milon C. Heymes Royer D. Segretain M. Silber S. Therouanne J. Haesebaert C. Llerena P. Michel Q. Reynaud |
| author_sort | D. Pougheon Bertrand |
| collection | DOAJ |
| description | Abstract Background The objective of the study was to elaborate a conceptual framework related to the domains of patient experience along the cystic fibrosis (CF) journey from the patients and parents of children with CF to inform the design of a patient-reported experience questionnaire. Method A collaborative research group including patients and parents with clinicians and academic researchers was set up. They identified the situations along the CF care pathway from diagnosis to paediatric care, transition to adult care and adult follow-up, transfer to transplant centres and follow-up after transplantation. Participants were recruited by CF centres in metropolitan France and overseas departments. Semi-structured interviews were conducted, transcribed verbatim and subjected to an inductive analysis conducted in duos of researchers/co-researchers using NVivo®. The conceptual framework was discussed with the research group and presented to the CF centres during two video conferences. The protocol obtained a favourable opinion from the Ethics Evaluation Committee of INSERM (IRB00003888-no. 20-700). Results The analysis led to a conceptual framework composed of domains of the CF journey, each divided into several items. 1. CF care: Management of care by the CF centre team; in-hospital care; quality of care in the community; therapeutic education and self-management support; at-home care; new therapies and research; procreation; 2. Transplant care: management of transplant and CF care; coordination with other specialties; education and self-management support; at-home care; procreation; new therapies and research; 3. Turning points along the journey: diagnosis of CF, transition to adult care, transfer to transplantation; 4. Social life with CF: housing, employment and education, social relations, social welfare and family finances. The number of patients included and the diversity of situations made it possible to achieve a sufficient richness and saturation of codes by domain to develop patient experience questionnaires. Conclusion 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. |
| first_indexed | 2024-04-09T22:37:46Z |
| format | Article |
| id | doaj.art-0352ed5ad9654817b121952c02b63d76 |
| institution | Directory Open Access Journal |
| issn | 1750-1172 |
| language | English |
| last_indexed | 2024-04-09T22:37:46Z |
| publishDate | 2023-02-01 |
| publisher | BMC |
| record_format | Article |
| series | Orphanet Journal of Rare Diseases |
| spelling | doaj.art-0352ed5ad9654817b121952c02b63d762023-03-22T12:21:45ZengBMCOrphanet Journal of Rare Diseases1750-11722023-02-0118111910.1186/s13023-023-02640-6A conceptual framework to develop a patient-reported experience questionnaire on the cystic fibrosis journey in France: the ExPaParM collaborative studyD. Pougheon Bertrand0A. Fanchini1P. Lombrail2G. Rault3A. Chansard4N. Le Breton5C. Frenod6F. Milon7C. Heymes Royer8D. Segretain9M. Silber10S. Therouanne11J. Haesebaert12C. Llerena13P. Michel14Q. Reynaud15Université Sorbonne Paris Nord (USPN), LEPS, UR 3412Université Sorbonne Paris Nord (USPN), LEPS, UR 3412Université Sorbonne Paris Nord (USPN), LEPS, UR 3412Université Sorbonne Paris Nord (USPN), LEPS, UR 3412Groupe Des Co-Chercheurs Patients et Parents d’enfants Atteints de Mucoviscidose, USPN, LEPS, UR 3412Groupe Des Co-Chercheurs Patients et Parents d’enfants Atteints de Mucoviscidose, USPN, LEPS, UR 3412Groupe Des Co-Chercheurs Patients et Parents d’enfants Atteints de Mucoviscidose, USPN, LEPS, UR 3412Groupe Des Co-Chercheurs Patients et Parents d’enfants Atteints de Mucoviscidose, USPN, LEPS, UR 3412Groupe Des Co-Chercheurs Patients et Parents d’enfants Atteints de Mucoviscidose, USPN, LEPS, UR 3412Groupe Des Co-Chercheurs Patients et Parents d’enfants Atteints de Mucoviscidose, USPN, LEPS, UR 3412Groupe Des Co-Chercheurs Patients et Parents d’enfants Atteints de Mucoviscidose, USPN, LEPS, UR 3412Centre de Ressources et de Compétences Mucoviscidose, CHU LilleLaboratory RESHAPE U. INSERM 1290, Claude Bernard Lyon1 UniversityCentre de Ressources et de Compétences Mucoviscidose, Hôpital Couple-EnfantsLaboratory RESHAPE U. INSERM 1290, Claude Bernard Lyon1 UniversityLaboratory RESHAPE U. INSERM 1290, Claude Bernard Lyon1 UniversityAbstract Background The objective of the study was to elaborate a conceptual framework related to the domains of patient experience along the cystic fibrosis (CF) journey from the patients and parents of children with CF to inform the design of a patient-reported experience questionnaire. Method A collaborative research group including patients and parents with clinicians and academic researchers was set up. They identified the situations along the CF care pathway from diagnosis to paediatric care, transition to adult care and adult follow-up, transfer to transplant centres and follow-up after transplantation. Participants were recruited by CF centres in metropolitan France and overseas departments. Semi-structured interviews were conducted, transcribed verbatim and subjected to an inductive analysis conducted in duos of researchers/co-researchers using NVivo®. The conceptual framework was discussed with the research group and presented to the CF centres during two video conferences. The protocol obtained a favourable opinion from the Ethics Evaluation Committee of INSERM (IRB00003888-no. 20-700). Results The analysis led to a conceptual framework composed of domains of the CF journey, each divided into several items. 1. CF care: Management of care by the CF centre team; in-hospital care; quality of care in the community; therapeutic education and self-management support; at-home care; new therapies and research; procreation; 2. Transplant care: management of transplant and CF care; coordination with other specialties; education and self-management support; at-home care; procreation; new therapies and research; 3. Turning points along the journey: diagnosis of CF, transition to adult care, transfer to transplantation; 4. Social life with CF: housing, employment and education, social relations, social welfare and family finances. The number of patients included and the diversity of situations made it possible to achieve a sufficient richness and saturation of codes by domain to develop patient experience questionnaires. Conclusion 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.https://doi.org/10.1186/s13023-023-02640-6Collaborative researchHealth service researchPatient experiencePatient reported experience measuresCystic fibrosis careQuality improvement |
| spellingShingle | D. Pougheon Bertrand A. Fanchini P. Lombrail G. Rault A. Chansard N. Le Breton C. Frenod F. Milon C. Heymes Royer D. Segretain M. Silber S. Therouanne J. Haesebaert C. Llerena P. Michel Q. Reynaud A conceptual framework to develop a patient-reported experience questionnaire on the cystic fibrosis journey in France: the ExPaParM collaborative study Orphanet Journal of Rare Diseases Collaborative research Health service research Patient experience Patient reported experience measures Cystic fibrosis care Quality improvement |
| title | A conceptual framework to develop a patient-reported experience questionnaire on the cystic fibrosis journey in France: the ExPaParM collaborative study |
| title_full | A conceptual framework to develop a patient-reported experience questionnaire on the cystic fibrosis journey in France: the ExPaParM collaborative study |
| title_fullStr | A conceptual framework to develop a patient-reported experience questionnaire on the cystic fibrosis journey in France: the ExPaParM collaborative study |
| title_full_unstemmed | A conceptual framework to develop a patient-reported experience questionnaire on the cystic fibrosis journey in France: the ExPaParM collaborative study |
| title_short | A conceptual framework to develop a patient-reported experience questionnaire on the cystic fibrosis journey in France: the ExPaParM collaborative study |
| title_sort | conceptual framework to develop a patient reported experience questionnaire on the cystic fibrosis journey in france the expaparm collaborative study |
| topic | Collaborative research Health service research Patient experience Patient reported experience measures Cystic fibrosis care Quality improvement |
| url | https://doi.org/10.1186/s13023-023-02640-6 |
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