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Syndrome De Fatigue Chronique: Diagnostic, Traitement Et Syndrome de Fatigue Chronique : diagnostic, traitement et organisation des soins KCE reports 88B Federaal Kenniscentrum voor de Gezondheidszorg Centre fédéral d’expertise des soins de santé 2008 Le Centre fédéral d’expertise des soins de santé Présentation : Le Centre fédéral d’expertise des soins de santé est un parastatal, créé le 24 décembre 2002 par la loi-programme (articles 262 à 266), sous tutelle du Ministre de la Santé publique et des Affaires sociales, qui est chargé de réaliser des études éclairant la décision politique dans le domaine des soins de santé et de l’assurance maladie. Conseil d’administration Membres effectifs : Gillet Pierre (Président), Cuypers Dirk (Vice-Président), Avontroodt Yolande, De Cock Jo (Vice-Président), De Meyere Frank, De Ridder Henri, Gillet Jean- Bernard, Godin Jean-Noël, Goyens Floris, Maes Jef, Mertens Pascal, Mertens Raf, Moens Marc, Perl François, Van Massenhove Frank, Vandermeeren Philippe, Verertbruggen Patrick, Vermeyen Karel. Membres suppléants : Annemans Lieven, Bertels Jan, Collin Benoît, Cuypers Rita, Decoster Christiaan, Dercq Jean-Paul, Désir Daniel, Laasman Jean-Marc, Lemye Roland, Morel Amanda, Palsterman Paul, Ponce Annick, Remacle Anne, Schrooten Renaat, Vanderstappen Anne.. Commissaire du gouvernement : Roger Yves Direction Directeur général a.i. : Jean-Pierre Closon Directeur général adjoint a.i. : Gert Peeters Contact Centre fédéral d’expertise des soins de santé (KCE). Centre Administrative Doorbuilding Avenue Jardin Botanique 55 B-1000 Bruxelles Belgium Tel: +32 [0]2 287 33 88 Fax: +32 [0]2 287 33 85 Email : [email protected] Web : http://www.kce.fgov.be Syndrome de Fatigue Chronique : diagnostic, traitement et organisation des soins KCE reports 88 B SABINE STORDEUR, NANCY THIRY, MARIJKE EYSSEN Federaal Kenniscentrum voor de gezondheidszorg Centre fédéral d’expertise des soins de santé 2008 KCE REPORTS 88 B Titre : Syndrome de Fatigue Chronique : diagnostic, traitement et organisation des soins. Auteurs : Sabine Stordeur, Nancy Thiry, Marijke Eyssen Experts externes : Les 20 experts suivants ont formulé, dans le cadre de la collaboration avec le Conseil Supérieur de la Santé, un avis sur ce rapport : Joel Boydens (Mutualités Chrétiennes, Psychiatre); Elie Cogan (ULB, Hôpital Universitaire Erasme, service de Médecine Interne); Els Coremans (UCL, Cliniques Universitaires de Mont-Godinne, service de Psychiatrie); Tom Declercq (UGent, departement Geneeskunde vakgroep Huisartsgeneeskunde en Eerstelijnsgezondheidszorg); Koen Deraedt (INAMI, Direction Etablissements et Services de Soins); Benjamin Fischler (Président du groupe de travail ‘SFC’ au Conseil Supérieur de la Santé; consultant Psychiatrie, Hôpital Saint-Pierre, Bruxelles); Michel Lambert (UCL, Cliniques universitaires Saint-Luc, service de Médecine Interne); Patrick Luyten (KULeuven, departement Psychologie); Etienne Masquelier (UCL, Cliniques universitaires Saint-Luc, service de Médecine Physique et Réadaptation); Didier Macquet (CHU Liège, service de Physiothérapie); Greta Moorkens (UA, UZ Antwerpen, dienst Inwendige Geneeskunde); Eddy Neerinckx (KULeuven, departement Bewegings- en revalidatiewetenschappen); Jo Nijs (VUB, departement Lichamelijke opvoeding en kinesitherapie; Hogeschool Antwerpen departement Gezondheidszorg); Carine Poppe (UGent, departement Psychologie); Daniel Spooren (UGent, departement Psychologie); Boudewijn Van Houdenhove (KUL-UZLeuven, dienst Psychiatrie); Peter Van Wambeke (KUL-UZLeuven, dienst Fysische geneeskunde en revalidatie); Brigitte Velkeniers (VUB- UZBrussel, dienst Inwendige Geneeskunde); Elke Van Hoof (VUB, departement Psychologische en Educatieve Wetenschappen; Universiteit Hasselt, departement Geneeskunde); Dirk Vogelaers (UGent- UZ Gent, dienst Inwendige Ziekten) Acknowledgements: Benny Fischler, président du groupe de travail SFC au Conseil Supérieur de la Santé; Dirk Ramaekers, directeur général du KCE, pour les commentaires apportés au document de travail. Validateurs : James F Jones, Research Medical Officer, Centers for Disease Control and Prevention, Atlanta (USA); An Mariman, UGent- UZ Gent, dienst Psychiatrie; Jos W van der Meer, Radboud Universiteit Nijmegen- Universitair Medisch Centrum St Radboud, afdeling Algemeen Interne Geneeskunde (Nederland) Conflict of interest : Les 7 experts suivants exercent leur activité dans un centre de référence pour le SFC : Els Coremans, Greta Moorkens, Carine Poppe, Daniel Spooren, Boudewijn Van Houdenhove, Peter Van Wambeke, Dirk Vogelaers. Les 2 experts suivants ont exercé dans le passé une activité dans un centre de référence pour le SFC : Michel Lambert, Etienne Masquelier. Disclaimer: Les experts externes ont collaboré au rapport scientifique qui a ensuite été soumis aux validateurs. La validation du rapport résulte d’un consensus ou d’un vote majoritaire entre les validateurs. Le KCE reste seul responsable des erreurs ou omissions qui pourraient subsister de même que des recommandations faites aux autorités publiques. Mise en Page : Wim Van Moer, Ine Verhulst Bruxelles, 30 Septembre 2008 Etude n° 2007-32-04 Domaine : Health Technology Assessment (HTA) MeSH : Fatigue Syndrome, Chronic- Health Services Research- Evidence-Based Medicine- Diagnosis- Developed Countries NLM classification : WB 146 Langage : français, anglais Format : Adobe® PDF™ (A4) Dépôt légal : D/2008/10.273/59 La reproduction partielle de ce document est autorisée à condition que la source soit mentionnée. Ce document est disponible en téléchargement sur le site Web du Centre fédéral d’expertise des soins de santé. Comment citer ce rapport ? Stordeur S, Thiry N, Eyssen M. Syndrome de Fatigue Chronique : diagnostic, traitement et organisation des soins. Health Services Research (HSR). Bruxelles: Centre fédéral d'expertise des soins de santé (KCE); 2008. KCE reports 88B (D/2008/10.273/59) KCE Reports 88 B Syndrome de fatigue chronique i PREFACE Dès 2002, les pouvoirs publics belges ont créé des centres de référence pour le Syndrome de Fatigue Chronique, se positionnant en pionniers dans ce domaine en Europe. De plus, les résultats des patients traités par ces centres ont été enregistrés de manière systématique, une première dans le monde de la revalidation en Belgique. Toutefois, le rapport d'évaluation rédigé par l’INAMI en 2006 reflète des résultats en demi-teinte : les résultats cliniques obtenus après plusieurs mois voire un an de traitement étaient en moyenne assez limités. Alors que la sévérité de la fatigue et le fonctionnement psychique des patients adultes s'étaient sensiblement améliorés, l'impact de la prise en charge sur la capacité à l’effort, la qualité de la vie et la reprise du travail n'était pas clair. De plus, le soutien apporté par les centres de référence aux soins de première et de seconde ligne était loin d’être optimal pour ce groupe de patients. L'accord de financement entre l'INAMI et ces centres de référence arrive à échéance le 30 septembre 2008. Se pose dès lors la question de sa prolongation au-delà de cette date. Les centres de référence offrent-ils aux patients les traitements les plus adaptés à leur syndrome et qui reposent sur les données probantes de la littérature scientifique? Ou bien existe-t-il d'autres thérapies susceptibles d’apporter de meilleurs résultats? D'un point de vue scientifique, quelle approche médicale est actuellement préconisée pour la prise en charge du Syndrome de Fatigue Chronique? L'INAMI a demandé au Conseil Supérieur de la Santé d’apporter une réponse à ces interrogations, en collaboration avec le KCE. La collaboration entre le KCE et le Conseil Supérieur de la Santé, n’est pas une primeur et, une fois de plus, elle s'est avérée fructueuse. Par conséquent, le présent rapport doit être lu en parallèle avec les recommandations qui seront éditées par le Conseil Supérieur de la Santé. Nous espérons que ce rapport constitue une bonne synthèse de l'état actuel des connaissances sur le Syndrome de Fatigue Chronique. Plus important encore, qu’il mette en lumière non seulement ce que nous savons déjà mais aussi les nombreuses carences qui subsistent dans les connaissances et la compréhension de ce syndrome et qu’il épingle les domaines devant faire l'objet de toute urgence d'études cliniques apportant un niveau de preuve supérieur à ce qui existe à ce jour. Gert Peeters Jean Pierre Closon Directeur Général Adjoint a.i Directeur Général a.i ii Syndrome de fatigue chronique KCE Reports 88 B Résumé OBJECTIF En 2002, à la demande du gouvernement, l'INAMI a reconnu 4 centres de référence pour adultes et un centre de référence pour enfants atteints du syndrome de fatigue chronique (SFC). En 2006, un rapport descriptif a fourni une évaluation de ces Centres de référence (CR). La convention établie entre l’INAMI et les CR expire le 30 septembre 2008. A cette date, l'INAMI doit prendre une décision relative aux règles de financement futures pour la prise en charge des patients SFC. Le KCE a été sollicité pour apporter une assise scientifique à la prise en charge des patients. Quant au Conseil Supérieur de la Santé, il a été chargé de formuler des recommandations pour l’avenir, sur base du rapport scientifique du KCE. Les principaux objectifs de cette étude sont d’actualiser les connaissances fondées sur les données probantes concernant : le diagnostic, le traitement, l’évaluation économique des thérapies disponibles et les difficultés vécues par les patients atteints du SFC. Par ailleurs, l'étude s'est intéressée aux alternatives organisationnelles adoptées dans d'autres pays pour assurer la prise en charge
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