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脑瘫青少年及成人的健康、功能与参与:结局研究综述

Health, functioning, and participation of adolescents and adults with cerebral palsy: a review of outcomes research.

作者信息

Frisch Dana, Msall Michael E

机构信息

Center for Developmental and Behavioral Pediatrics, University of Chicago Comer Children's Hospital, JP Kennedy Research Center on Intellectual and Developmental Disabilities, Chicago, Illinois 60637, USA.

出版信息

Dev Disabil Res Rev. 2013;18(1):84-94. doi: 10.1002/ddrr.1131.

Abstract

With medical advances, more individuals with cerebral palsy (CP) syndromes who reside in developed countries are surviving to adolescence and adulthood. However, there continues to be a paucity of research examining long-term health, functional activities, and participatory outcomes over their life-course. This article reviews the current literature assessing adult outcomes for individuals with CP within the framework of the International Classification of Functioning (ICF), Disability, and Health model of enablement. Preliminary data over the last decade indicate that among adults with cerebral palsy without intellectual disability, 60-80% completed high school, 14-25% completed college, up to 61% were living independently in the community, 25-55% were competitively employed, and 14-28% were involved in long term relationships with partners or had established families. These outcomes occurred with biomedical advances in the management of spasticity, deformity, and medical co-morbidities, as well as with concurrent policy initiatives to increase access to a continuum of habilitative and education services. Although we have incomplete population data to inform comprehensive life-course planning, there are opportunities to create clinical and translational community networks with improved measures of functioning and participation that can better inform us about the factors influencing lifespan development of people with CP.

摘要

随着医学的进步,发达国家中更多患有脑瘫(CP)综合征的个体存活至青春期和成年期。然而,针对他们一生中长期健康、功能活动和参与结果的研究仍然匮乏。本文在国际功能、残疾和健康分类(ICF)的赋能模型框架内,综述了评估脑瘫个体成人期结局的当前文献。过去十年的初步数据表明,在没有智力残疾的成年脑瘫患者中,60 - 80%完成了高中学业,14 - 25%完成了大学学业,高达61%在社区独立生活,25 - 55%有竞争性就业,14 - 28%与伴侣建立了长期关系或组建了家庭。这些成果的取得得益于在痉挛、畸形和合并症管理方面的生物医学进展,以及同时出台的旨在增加获得一系列康复和教育服务机会的政策举措。尽管我们缺乏完整的人群数据来为全面的人生规划提供信息,但仍有机会创建临床和转化社区网络,采用改进的功能和参与测量方法,从而能更好地让我们了解影响脑瘫患者寿命发展的因素。

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