While A E, Heery E, Sheehan A M, Coyne I
Florence Nightingale Faculty of Nursing and Midwifery, King's College London, London, UK.
School of Nursing and Midwifery, Trinity College Dublin, Dublin, Ireland.
Child Care Health Dev. 2017 Jan;43(1):144-151. doi: 10.1111/cch.12410. Epub 2016 Sep 27.
The numbers of children with long-term illnesses surviving into adulthood and transferring from child to adult services has increased dramatically in the last 30 years. This study aimed to examine health-related quality of life pre- and post-transfer from child to adult healthcare for young people with three long-term illnesses.
A total of 217 young people with cystic fibrosis, congenital heart defects or diabetes attending child and adult hospital services in Dublin, Ireland completed a questionnaire survey. Multiple linear regression was used to identify predictors of five dimensions of health-related quality of life pre- and post-transfer.
Post-transfer young people with congenital heart disease and diabetes reported significantly lower physical well-being than their pre-transfer counterparts. Pre-transfer young people with cystic fibrosis reported significantly lower physical well-being than those with diabetes, but there was no significant difference post-transfer. Pre-transfer females reported lower scores than males on the Psychological Well-being and Autonomy and Parent Relation dimensions; however, these differences disappeared post-transfer. Higher maternal overprotection scores were associated with significantly lower scores on the Psychological Well-being, Autonomy and Parent Relation, and Social Support and Peers dimensions, regardless of transfer status.
Disease group, gender and maternal overprotection were predictors of health-related quality of life pre- and post-transfer from child to adult healthcare. Transition programmes should promote self-management and discourage parental overprotection.
在过去30年中，患有长期疾病并存活至成年且从儿童服务转至成人服务的儿童数量急剧增加。本研究旨在调查患有三种长期疾病的年轻人从儿童医疗转至成人医疗前后与健康相关的生活质量。
共有217名患有囊性纤维化、先天性心脏病或糖尿病的年轻人在爱尔兰都柏林的儿童和成人医院就诊，他们完成了一项问卷调查。采用多元线性回归来确定转科前后与健康相关生活质量五个维度的预测因素。
转科后，患有先天性心脏病和糖尿病的年轻人报告的身体健康状况明显低于转科前。转科前，患有囊性纤维化的年轻人报告的身体健康状况明显低于患有糖尿病的年轻人，但转科后没有显著差异。转科前，女性在心理健康、自主性和亲子关系维度上的得分低于男性；然而，这些差异在转科后消失了。无论转科状态如何，母亲过度保护得分较高与心理健康、自主性和亲子关系以及社会支持和同伴维度上的得分显著较低相关。
疾病组、性别和母亲过度保护是儿童到成人医疗转科前后与健康相关生活质量的预测因素。过渡计划应促进自我管理并减少父母的过度保护。
