Roebroeck Marij E, Jahnsen Reidun, Carona Carlos, Kent Ruth M, Chamberlain M Anne
The Transition Research Group, Department of Rehabilitation Medicine, Erasmus MC - University Medical Center, Rotterdam, the Netherlands.
Dev Med Child Neurol. 2009 Aug;51(8):670-8. doi: 10.1111/j.1469-8749.2009.03322.x.
This paper aimed to discuss functioning, quality of life, (QoL) and lifespan care issues of adolescents and young adults with childhood-onset physical disability from a clinical, scientific, and personal perspective. We present a résumé of results of recently performed studies in rehabilitation-based samples of (young) adults with childhood-onset conditions such as cerebral palsy (CP) and spina bifida (SB), and different models of transition and lifespan care. The studies showed that many young adults with a childhood-onset disability experience health-related problems such as functional deterioration, pain or fatigue, and an inactive lifestyle. A significant number are restricted in participation in work, housing, and intimate relationships. They perceive a lower health-related and global QoL compared with a reference group. In some centres in the UK and the Netherlands specialized outpatient services are available or being developed. In conclusion, transition to adulthood is a critical phase for reaching autonomous participation in adult life. There is an international challenge to incorporate a lifespan perspective in paediatric, transition, and adult health care services for persons with a childhood-onset disability.
本文旨在从临床、科学和个人角度探讨患有儿童期起病的身体残疾的青少年和青年的功能、生活质量(QoL)以及终生护理问题。我们总结了最近在以康复为基础的样本中对患有儿童期起病疾病(如脑瘫(CP)和脊柱裂(SB))的(年轻)成年人进行的研究结果,以及不同的过渡和终生护理模式。研究表明,许多患有儿童期起病残疾的年轻人经历与健康相关的问题,如功能恶化、疼痛或疲劳,以及不活跃的生活方式。相当一部分人在工作、住房和亲密关系的参与方面受到限制。与参照组相比,他们认为自己与健康相关的生活质量和总体生活质量较低。在英国和荷兰的一些中心,有专门的门诊服务可供使用或正在开发中。总之,向成年期过渡是实现自主参与成人生活的关键阶段。将终生视角纳入针对患有儿童期起病残疾者的儿科、过渡和成人医疗服务中是一项国际挑战。