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[先天性肾上腺皮质增生症与生长激素缺乏症。成年期过渡的特殊护理]

[Congenital adrenal hyperplasia and growth hormone deficiency. Special care in transition to adulthood].

作者信息

Dörr H G, Schöfl C

机构信息

Pädiatrische Endokrinologie, Kinder- und Jugendklinik, Universität Erlangen, Loschgestrasse 15, 91054, Erlangen.

出版信息

Internist (Berl). 2009 Oct;50(10):1202, 1204, 1206 passim. doi: 10.1007/s00108-009-2401-3.

Abstract

Children with chronically endocrine diseases should be treated as young adults by adult endocrinologists. To optimize the transfer from the pediatric to adult endocrinologist, the model of a common transition clinic has been developed. Within this setting it should be possible to exchange experiences, extend the knowledge and understanding of the disease with the other side, and to provide for the patient an optimal outpatient care. This model, however, has only been sporadically realized to date. To set an example for the problems of the transition into adult endocrinology, we used two different endocrine diseases, the classical congenital adrenal hyperplasia due to 21-hydroxylase deficiency, and the childhood-onset growth hormone deficiency. Specific problems for this transfer to adult care are the fixation of the patients to their pediatricians and the lack of comprehension in the need of a long term and continuous therapy. The consequence is a dramatic impairment in the quality of the therapy.

摘要

患有慢性内分泌疾病的儿童应由成人内分泌科医生作为青年成人来治疗。为了优化从儿科内分泌科医生向成人内分泌科医生的转诊,已经建立了一个共同过渡诊所的模式。在这种情况下,应该有可能与对方交流经验,扩展对疾病的认识和理解,并为患者提供最佳的门诊护理。然而,到目前为止,这个模式只是偶尔得到实现。为了举例说明向成人内分泌科过渡的问题,我们使用了两种不同的内分泌疾病,即由于21-羟化酶缺乏引起的经典先天性肾上腺皮质增生症和儿童期起病的生长激素缺乏症。向成人护理过渡的具体问题是患者对儿科医生的依赖以及对长期持续治疗必要性的理解不足。其后果是治疗质量的严重受损。

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