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慢性病与过渡:行动时刻

Chronic illness and transition: time for action.

作者信息

Christie Deborah, Viner Russell

机构信息

Department of Paediatric and Adolescent Psychology, University College Hospital London NHS Foundation Trust, London, UK.

出版信息

Adolesc Med State Art Rev. 2009 Dec;20(3):981-7, xi.

Abstract

Adolescence is a developmental stage involving complex biopsycho-social changes that both impact upon and are impacted by chronic illness. There are increasing numbers of young people with chronic illnesses and/or disabilities surviving into adulthood; however, there has been limited preparation for the management of this group of young people. Despite poorly planned transition resulting in poor outcomes in physical and mental health, social and educational domains for many transitional policies remain as policies with adolescent health practitioners "talking the talk" but failing to "walk the walk". At the time of writing, only a minority of services have implemented transition policies identified as essential and recommended by young people, families, multidisciplinary teams, and target adult services. Lack of training in adolescent development and health care has been reported as a major barrier to the implementation of effective transitional programs. There needs to be a paradigm shift that acknowledges that after over 20 years of agreeing what is needed there is no further need to wait for evidence from rigorous evaluations to institute programs that ensure that adolescents are adequately trained in disease self-management and that a plan is in place to ensure their disease control or quality of life does not suffer in the move from pediatrics to adult services.

摘要

青春期是一个涉及复杂生物心理社会变化的发育阶段,这些变化既会影响慢性病,也会受到慢性病的影响。越来越多患有慢性病和/或残疾的年轻人存活至成年期;然而,对于管理这一群体的年轻人,准备工作却很有限。尽管过渡计划规划不当,导致许多青少年在身心健康、社会和教育领域的过渡结果不佳,但许多过渡政策仍然只是青少年健康从业者“纸上谈兵”,并未实际“付诸行动”。在撰写本文时,只有少数服务机构实施了被年轻人、家庭、多学科团队以及目标成人服务机构认定为必不可少且推荐的过渡政策。据报道,缺乏青少年发育和医疗保健方面的培训是有效实施过渡项目的主要障碍。需要进行范式转变,承认在经过20多年的时间已就所需内容达成共识后,无需再等待严格评估的证据来设立项目,以确保青少年在疾病自我管理方面得到充分培训,并制定计划以确保他们在从儿科服务过渡到成人服务的过程中,疾病控制或生活质量不受影响。

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