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P330 A national survey on therapeutic education in inflammatory bowel disease by an association of caregivers and expert patients: French Association for Therapeutic Education in inflammatory bowel disease (AFEMI)

J. Moreau1, E. Balez2, C. Devos3, X. Hébuterne4, M. Veltin5, M. Allez*6

1Rangueil Hospital and University, Gastroenterology, Toulouse, France, 2Afa Crohn RCH France, Nice, France, 3Afa Crohn RCH France, Paris, France, 4Nice Hospital and University, Gastroenterology, Nice, France, 5Nancy Brabois Regional University Hospital, Vandœuvre-lès-Nancy, France, 6Saint-Louis Hospital, Gastroenterology, Paris, France


Nowadays, many stakeholders are convinced of the essential role that therapeutic patient education (TPE) plays in the management of inflammatory bowel disease (IBD) and in the improvement of patients’ quality of life. This led to the creation, in 2018, of AFEMI (French Association for Therapeutic Education in IBD). The purpose of this national survey was to determine the current situation of TPE in IBD in France.


Questionnaires were developed by a committee of physicians, TPE specialists and patients, and were emailed to 73 centres involved in the care of patients with IBD. Questionnaires have been completed by gastroenterologists, nurse coordinators or by the entire TPE team.


Of the 73 centres contacted, 37 responded, including 33 public (university and non-university hospital) and four private centres. Of the responding centres, 70% reported having an accredited IBD TPE Programme. One was being created in 16% of the centres. Seventy per cent of the centres had a transversal TPE structure. The number of educators ranged from 1 to 5, with a mean of 2.5. Six people (on average) were involved in TPE programmes, with considerable variety between centres. Finally, TPE was defined as a priority action for the centre in only 26% of the responding centres. Less than half of the centres had a room dedicated to TPE and/or a transversal platform for patients. Among the topics addressed in individual sessions or in workshops, knowledge of the disease (95%), diet (91%), fatigue (77%) were almost always routinely proposed, while pain (18%), physical activity (27%) or work (50%) were not always covered. Sixty-eight per cent of responding centres did not have a tool for evaluation or planning of their TPE program. Twenty-four per cent of respondents used digital media (applications, websites, telemedicine) for the daily practice of TPE. Fifty per cent of the patients enrolled in a TPE program in the responding centres had been referred by the French Crohn’s and colitis association (AFA, Association François Aupetit). Twenty-nine per cent of the centres routinely offered TPE sessions to all patients and 24% of the centres held them during consultations. Fifty-two per cent of the centres involved an expert patient in their program. An educational diagnosis was only made for 33% of the patients and an evaluation of the benefits of the TPE at the end of the program was only carried out in 28% of the centres.


TPE in IBD has started to develop and is becoming more organised in France, even if there is still a heterogeneity of practices. AFEMI's key missions are to promote the development of TPE in IBD and to harmonise practices (specific training of IBD educators, development of better tools, healthcare professionals support through structured programmes).

Institutional support was provided by Takeda France.