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[从儿科护理到成人医学:镰状细胞病患者的过渡,一项法国单中心研究]

[From pediatric care to adult medicine: Transition of sickle cell patients, a French monocentric study].

作者信息

Colinart-Thomas M, Noël V, Roques G, Gordes-Grosjean S, Abely M, Pluchart C

机构信息

Unité d'hémato-oncologie pédiatrique, service de pédiatrie A, hôpital américain, CHU de Reims, 45, rue Cognacq-Jay, 51092 Reims cedex, France.

Service de médecine interne, maladies infectieuses et immunologie clinique, CHU de Reims, 45, rue Cognacq-Jay, 51092 Reims cedex, France.

出版信息

Arch Pediatr. 2018 Apr;25(3):199-206. doi: 10.1016/j.arcped.2017.12.012. Epub 2018 Mar 9.

Abstract

Sickle cell disease, a hemoglobin disorder with autosomal recessive transmission, is one of the most common genetic diseases screened in France. Thanks to early management, 95% of sickle cell patients reach adulthood and require transition from pediatric care to adult care. Through a retrospective study of records from serious sickle cell patients over 17 years old, followed in the hematology-oncology pediatric unit of Reims University Hospital Center in France, we analyzed transition conditions, compared pediatric and adult management, and proposed a plan for transition care. As of 1 January 2016, out of 19 sickle cell patients meeting the inclusion criteria, 12 had made the transition from pediatric care to adult medicine. Among the transition group, the transition was proposed by the pediatrician in 92% of cases. The average age of transition was 19.4 years. The time between receiving the information and the last pediatric visit was 2.4 months. Seven out of the 12 patients were informed of their transition during the last pediatric visit. The age of the first adult visit was 20.3 years. There was no alternate or joint consultation. The treatments prescribed during the last pediatric visit were not modified during the first adult visit. The average number of hospitalizations per patient was 2.7 in pediatric care and 3.4 in adult care with a median value of 2 in both groups. Three out of 12 patients died, the average age of death being 26.7 years. Transition is an important milestone in chronic disease patients. More than age, the maturity of the patient must be taken into account. The transition to the adult structure requires early preparation in the teenage years and investment of the adolescent and his family as well as investment of pediatric and adult caregivers. This study points out the need to establish a transition plan within our hospital in collaboration with adult physicians. Continuity of care is necessary to increase the quality of managing patients and cannot be done without a close relationship between pediatric specialists and adult physicians.

摘要

镰状细胞病是一种常染色体隐性遗传的血红蛋白疾病,是法国筛查的最常见的遗传疾病之一。得益于早期管理,95%的镰状细胞病患者能够成年,并需要从儿科护理过渡到成人护理。通过对法国兰斯大学医院中心儿科血液肿瘤病房收治的17岁以上重症镰状细胞病患者的记录进行回顾性研究,我们分析了过渡情况,比较了儿科和成人管理,并提出了过渡护理计划。截至2016年1月1日,在19名符合纳入标准的镰状细胞病患者中,有12人已从儿科护理过渡到成人医学护理。在过渡组中,92%的病例是由儿科医生提出过渡建议的。平均过渡年龄为19.4岁。从收到信息到最后一次儿科就诊的时间为2.4个月。12名患者中有7名在最后一次儿科就诊时被告知过渡事宜。首次成人就诊的年龄为20.3岁。没有进行交替或联合会诊。最后一次儿科就诊时开具的治疗方案在首次成人就诊时未作修改。儿科护理期间每位患者的平均住院次数为2.7次,成人护理期间为3.4次,两组的中位数均为2次。12名患者中有3人死亡,平均死亡年龄为26.7岁。过渡是慢性病患者的一个重要里程碑。除了年龄,还必须考虑患者的成熟度。向成人机构的过渡需要在青少年时期尽早做好准备,需要青少年及其家庭以及儿科和成人护理人员的投入。本研究指出有必要在我们医院与成人医生合作制定过渡计划。护理的连续性对于提高患者管理质量是必要的,而没有儿科专家和成人医生之间的密切关系则无法实现。

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