成人护理
自治
医学
多学科方法
医疗保健
家庭医学
重症监护医学
儿科
年轻人
老年学
政治学
社会科学
经济增长
社会学
经济
法学
作者
B. Chabrol,Paul Jacquin,Luis Acao François,Pierre Broué,Dries Dobbelaere,Claire Douillard,Sandrine Dubois,François Feillet,Alexandre Perrier,Alain Fouilhoux,François Labarthe,Delphine Lamireau,K. Mazodier,F. Maillot,Fanny Mochel,Manuel Schiff,Nadia Belmatoug
标识
DOI:10.1016/j.arcped.2018.05.009
摘要
Inherited metabolic diseases (IMD) form a heterogeneous group of genetic disorders that surface primarily during childhood and result in significant morbidity and mortality. A prevalence of 1 in 2500-5000 live births is often reported. The transfer of adolescents from pediatric care to adult health facilities is often difficult for patients and their families and can lead to a breakdown in medical follow-up and therefore serious complications. Existing recommendations for the successful transition of patients with chronic disorders do not specifically address patients with IMDs associated with dietary treatment. Here, the French network for rare inherited metabolic diseases (G2M) presents its reflections and recommendations for a successful transition. Preparations for the transfer must be made well in advance. The transfer must aim for adolescents gaining autonomy by making them responsible and providing them with the knowledge that will enable them to manage their care themselves, know how to react appropriately if there is any change in their condition, and move comfortably within the adult healthcare system. This requires the active participation of the patient, his or her family, and pediatric and adult care teams. It involves multidisciplinary management plus the production and maintenance of an educational therapy program. Finally, the identification of physicians and dietitians trained in IMDs, relevant subspecialists, and even expert patients could improve the continuum of complete and appropriate care for these patients within adult medicine.
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