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Pourquoi une Société française du TDAH ? - 18/09/24

Why is a French Society for ADHD needed?

Doi : 10.1016/j.amp.2024.08.022 
Diane Purper-Ouakil a, , b , Stéphanie Bioulac-Rogier c, Hervé Caci d, Maëva Roulin e, Benjamin Rolland f, g, Thiébaut-Noël Willig h, i, j
a Service de médecine psychologique de l’enfant et de l’adolescent (MPEA1), CHU de Montpellier–hôpital Saint-Éloi, université de Montpellier, 80, avenue Augustin-Fliche, 34000 Montpellier, France 
b Équipe psychiatrie, développement et trajectoires, Inserm U 1018, CESP université Paris Saclay, Villejuif, France 
c CHU de Grenoble, Grenoble, France 
d Hôpitaux pédiatriques de Nice, CHU de Lenval, 57, avenue de la Californie, Nice, France 
e Centre Genepsy, Romans-sur-Isère, France 
f SUAL Le Vinatier, hospices civils de Lyon, Bron, France 
g Inserm U1028, CNRS UMR5292, université Claude-Bernard Lyon 1, Bron, France 
h Occitadys, 24, impasse de la Flambère, 31200 Toulouse, France 
i Consultation de pédiatrie, clinique Ambroise-Paré, Elsan, Toulouse, France 
j Centre de bilan EvEnTAiL31, 31100 Toulouse, France 

Auteur correspondant.
En prensa. Pruebas corregidas por el autor. Disponible en línea desde el Wednesday 18 September 2024

Résumé

Cet article décrit le contexte de la création de la Société française du TDAH (SF-TDAH), une association pour les professionnels intéressés et impliqués dans le parcours de soin des personnes concernées par ce trouble. Ses objectifs sont multiples mais ont comme ligne directrice essentielle la diffusion des connaissances et pratiques basées sur des données probantes. Nous reviendrons ici sur les missions que se donne la SF-TDAH et sur ses premiers travaux. Ceux-ci ont débuté par la collaboration avec les pouvoirs publics dans le cadre de la stratégie nationale en faveur des troubles du neurodéveloppement et sur des points d’actualité comme l’accessibilité des traitements et la communication scientifique. Les chantiers sont nombreux et nous souhaitons que la SF-TDAH y apportera une contribution dynamique et efficace.

El texto completo de este artículo está disponible en PDF.

Abstract

This document provides an overview of the establishment, objectives, and early activities of the first professional ADHD society in France, the “Société française du TDAH (SF-TDAH)”. The SF-TDAH aims to improve coordination among professionals involved in ADHD treatment and care throughout all ages. There are still significant issues in France for people with ADHD and families, including difficult access to care, a lack of trained healthcare professionals, and long waiting times for diagnosis and treatment. Additionally, concerns were raised about the effectiveness of generic medications and the variability of access to psychoeducation, psychological treatments, and school accommodations. The situation was particularly dire for adults, with limited treatment options and no authorization for ADHD medications. Since then, the French National Authority for Health (HAS) has started developing recommendations for diagnosing and treating ADHD in children and adolescents, expected to be published in 2024. A working group for adult ADHD recommendations will follow. In 2023, the national health authorities formed a group of experts and patient representatives to address ADHD-related issues, including prevalence, care pathways, professional training, and treatment access. The creation of the SF-TDAH is an output of this group with the objective to form a collective of professionals to promote best practices, collaboration, and research. The society's members include recognized professionals in child and adult ADHD from clinical and research backgrounds and representatives from scientific societies, public organizations, and ADHD associations. The SF-TDAH aims to: • Improve care quality through evidence-based and personalized medicine for ADHD and comorbidities. • Disseminate scientifically supported information to healthcare professionals and those involved in ADHD diagnosis and treatment. • Engage in initial and ongoing training for healthcare professionals across various sectors. • Combat stigma and exclusion through scientifically supported information. • Promote interdisciplinary scientific research on ADHD. • Collaborate with national and international scientific societies and research organizations. • Advocate for healthcare system improvements to enhance care accessibility and coordination. • Ensure better recognition and reimbursement for ADHD care in the healthcare system. SF-TDAH plans to achieve its objectives through: • Organizing training sessions, public meetings, conferences, and congresses for healthcare professionals and the public. • Publishing in various media, both print and electronic. • Engaging with the public, healthcare professionals, and authorities to advocate for ADHD-related issues. • Developing a national network of healthcare professionals, psychologists, and patient experts. • Participating in national and international professional associations and user organizations. • Maintaining an informative website for ADHD-affected individuals and their families. The SF-TDAH has contributed to the development of a charter for ADHD resource centers, which aims to enhance regional professional networks and skills. It also produced a report on methylphenidate generics, addressing concerns about supply disruptions and proposing solutions to ensure medication availability. The SF-TDAH has participated in several ADHD-related events and organized its own, including a scientific day in Lyon and a conference with the Société Médico-Psychologique. Internationally, SF-TDAH has been active in events such as the World Congress of Child and Adolescent Psychiatry organized by ICAPAP. The SF-TDAH supports research by responding to calls for proposals from national research institutions. The SF-TDAH aims to continue collaborating with ADHD associations and public authorities to enhance care and research networks. Establishing ADHD resource centres and developing a network of professionals is crucial for achieving these goals. The society seeks to increase its visibility and influence to better advocate for ADHD-affected individuals at national and international levels.

El texto completo de este artículo está disponible en PDF.

Mots clés : Trouble déficit d’attention hyperactivité (TDAH), Société, Professions de santé

Keywords : Attention deficit hyperactivity disorder, Society, Healthcare professionals


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