Georgin-Lavialle S, Hentgen V, Truchetet M E, Romier M, Hérasse M, Maillard H, Pha M, Pillet P, Reumaux H, Duquesne A, Larbre J P, Belot A
Sorbonne Université, Service de médecine interne, Centre de Référence des Maladies Auto-Inflammatoire et de l'Amylose inflammatoire (CeRéMAIA), Hôpital Tenon, 4, rue de la Chine, Paris, France.
Service de pédiatrie, Centre de Référence des Maladies Auto-Inflammatoire et de l'Amylose inflammatoire (CeRéMAIA), Centre Hospitalier de Versailles André Mignot, 178, rue de Versailles, Le Chesnay, France.
Rev Med Interne. 2021 Sep;42(9):633-638. doi: 10.1016/j.revmed.2021.02.003. Epub 2021 Jun 17.
Autoimmune and autoinflammatory diseases (AIDs) are a heterogeneous group of diseases. They can occur in childhood and account for significant morbidity and mortality. Transitioning from pediatric to adult healthcare can be difficult for patients and their families. It can interfere with patient follow-up and management, and eventually lead to complications. Although recommendations exist for the successful transition of patients with chronic diseases, few are specifically adapted to children and adults with AIDs (Suris et al., 2015-Solau-Gervais, 2012). The French working group on transition of the rare autoimmune and autoinflammatory diseases presents its reflections and recommendations for a successful transition. Preparation for transition should start early. Its goals are to empower adolescents by providing them with the knowledge to manage their own care, respond appropriately to changes in their condition, and evolve within the adult healthcare system. This requires the active participation of the patient, his or her family, as well as the pediatric and adult medical teams. The transition process involves multidisciplinary care and dedicated therapeutic education programs. Finally, the identification of medical specialists by region, trained in rare AIDs and accompanied by expert patients, may improve the management of patients with rare AIDs from adolescence to adulthood.
自身免疫性和自身炎症性疾病（AIDs）是一组异质性疾病。它们可在儿童期发病，导致相当高的发病率和死亡率。对患者及其家庭而言，从儿科医疗过渡到成人医疗可能困难重重。这可能会干扰患者的随访和管理，最终导致并发症。尽管存在关于慢性病患者成功过渡的建议，但很少有专门适用于患有AIDs的儿童和成人的建议（苏里等人，2015年 - 索劳 - 热尔韦，2012年）。法国罕见自身免疫性和自身炎症性疾病过渡工作组提出了关于成功过渡的思考和建议。过渡准备应尽早开始。其目标是通过为青少年提供管理自身护理、适当应对病情变化以及在成人医疗系统中发展的知识，增强他们的能力。这需要患者及其家庭以及儿科和成人医疗团队的积极参与。过渡过程涉及多学科护理和专门的治疗教育计划。最后，按地区确定接受过罕见AIDs培训并由专家患者陪同的医学专家，可能会改善从青少年到成年期罕见AIDs患者的管理。
