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线粒体疾病：对护理者、家庭及社会的一项挑战。

Mitochondrial disease: a challenge for the caregiver, the family, and society.

作者信息

Sofou Kalliopi

机构信息

Department of Pediatrics, University of Gothenburg, The Queen Silvia's Children Hospital, Gothenburg, Sweden.

出版信息

J Child Neurol. 2013 May;28(5):663-7. doi: 10.1177/0883073813481622. Epub 2013 Mar 25.

DOI:10.1177/0883073813481622
PMID:23529909
Abstract

Mitochondrial diseases represent a genetically and clinically heterogeneous group of inherited metabolic disorders, often resulting in poor functional and survival outcomes for the patient and considerable psychosocial distress for the caregiver. The systematic review undertaken in the present paper emphasizes the critical role of the caregiver in the management of a child with mitochondrial disease, with focus on the burden of mitochondrial disease on the caregiver, the family, and society.

摘要

线粒体疾病是一组遗传和临床异质性的遗传性代谢紊乱疾病，常常导致患者功能不佳和生存预后不良，给照料者带来相当大的心理社会压力。本文所进行的系统评价强调了照料者在患有线粒体疾病儿童的管理中的关键作用，重点关注线粒体疾病给照料者、家庭和社会带来的负担。

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