Robin Bouille, PharmD, Pharmacien – ÉduSanté
Meryem Farhat, Praticienne hospitalière, Centre de référence des Maladies Auto-Immunes Systémiques rares du Nord et Nord-Ouest (CeRAINO), CHU de Lille
Géraldine Wojtasik, Infirmière coordonnatrice et formatrice en Éducation Thérapeutique du Patient, CHU de Lille
Evaluation of therapeutic patient education (TPE) in rare diseases in France
This project was initiated by the Direction Générale de l'Offre de Soins (DGOS) and focuses on evaluating the impact of therapeutic education on patients with rare diseases and their caregivers. The company Édusanté has been chosen to carry out this project.
The project is being conducted using a multi-stage methodology :
- An interdisciplinary working group was set up to support the project's overall considerations.
- A literature review.
- A cartography (quantitative and qualitative analysis of the TPE programs funded by the DGOS during the 2019 and 2020 calls for projects, with a focus on remote therapeutic patient education programs (e-TPE) and those aimed at caregivers).
In addition, a mixed-methodology survey is also being carried out (in progress) to gather the experience of patients, caregivers, and educational team members of TPE programs in rare diseases. The aim of this survey is to understand the expectations, needs and difficulties of each, as well as to propose actions for improvement and recommendations for optimizing TPE in rare diseases. The participation of all those involved in TPE in rare diseases is essential. Patients, caregivers, rare disease health networks, centers of reference and expertise, patient associations and healthcare professionals are being asked to take part in the qualitative survey and to respond to the quantitative survey (online questionnaire).
An evaluation report and publications will be produced at the end of the project, in December 2023 and over 2024. The conclusions and recommendations may contribute to improving practices and developing the regulatory framework for TPE programs in rare diseases, in line with the 3rd National Plan for Rare Diseases (PNMR3).
This study has been approved by the CESREES and authorized by the CNIL.
Following on from this project, the filières de santé maladies rares would like to support the funding of a 3-year science thesis. The aim of this thesis project could be to study evaluative approaches to therapeutic patient education, ideally with the design of a TPE evaluation questionnaire specific to the rare disease context.