Validité de construit d’un dispositif d’évaluation pédagogique pour des enfants de 9–11 ans en surpoids ou obèses

Parthenay, A.; Domecq, S.; travail, Rémi Gagnayre les membres d’un groupe de

doi:10.1051/tpe/2015004

Cited by 2 publications

(1 citation statement)

References 32 publications

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“…This phase aims to establish the construct validity [ 41 ] of the questionnaire: for patients: usefulness in evaluating their own patient pathway in all its various dimensions, by means of specific questions at the end of the questionnaire; for the care teams and the QI coordinators in the CF centres: usefulness in understanding the main elements of patient experience of the cystic fibrosis pathway and the usefulness of the results to improve the quality of care and services for patients, by means of videoconferences; …”

Section: Methodsmentioning

confidence: 99%

Collaborative research protocol to define patient-reported experience measures of the cystic fibrosis care pathway in France: the ExPaParM study

Bertrand

Fanchini

Rault

et al. 2022

Orphanet J Rare Dis

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Introduction In France, the cystic fibrosis (CF) care pathway is coordinated by multidisciplinary teams from specialised CF centres or transplant centres. It includes the care provided at home or out of hospital, risk prevention in daily life and adjustments to social life, which together contribute to the person’s quality of life. Patient experience is used to describe and evaluate the care and life of patients living with the disease. Objectives Our collaborative research aims to identify the most significant areas and criteria that characterise the CF pathway. It will lead to the development of a questionnaire to collect patients' experience, which can be administered to all patients or parents of children registered and followed in the centres. The article describes the protocol developed in partnership with patients and parents of children living with the disease. Method A multidisciplinary research group brings together researchers, patients, parents of children with CF and health care professionals. The patient partnership is involved in the 4 phases of the protocol: (1) setting up the study, recruiting patient and parent co-researchers, training them in qualitative research methods, defining the situations and profiles of patients in the study population, elaborating the protocol; (2) selecting the study sites, recruiting participants, carrying out semi-structured interviews, analysing verbatims using the grounded theory approach; (3) co-elaborating Patient-Reported Experience Measures (PREM) questionnaires adapted to the 4 types of participants: parents, adolescents, non-transplanted adults and transplanted adults; (4) validating the construct with participants and professionals from the study centres. Results The protocol obtained a favourable opinion from the Ethics Evaluation Committee of INSERM (IRB00003888—no. 20-700). Training was provided to the 5 patients and 2 parent co-researchers to enable them to participate effectively in the research. Eleven centres participated in the recruitment of participants in mainland France and Reunion Island. Eighty hours of interviews were conducted. Discussion The PREM questionnaires to be elaborated will have to undergo psychometric validation before being used by the actors of the CF network to assess the impact on the care pathways of quality approaches or new therapies available in cystic fibrosis. Trial Registration Registry: IRB00003888 – no. 20-700. Issue date: 06/09/2020.

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