Schrag Anette, Morley David, Quinn Niall, Jahanshahi Marjan
Royal Free & University College Medical School, University College London, London NW3 2PF, UK.
Parkinsonism Relat Disord. 2004 Oct;10(7):391-7. doi: 10.1016/j.parkreldis.2004.03.011.
We assessed the impact of Parkinson's disease (PD) on the well-being of patients' adolescent and adult children. Eighty-nine participants aged 12-48 completed a number of questionnaires on quality of life (QoL) and psychosocial variables. One fifth of the participants were mildly to moderately depressed, and children below the age of 18 years scored similarly to children with epilepsy in the domains of Attitude, School behaviour, and Social support on a QoL instrument for children with epilepsy. The impact of parental PD increased with disease duration. Younger children perceived a higher burden of daily help and impact on their social interactions than older children, while older participants reported greater impairment of family functioning. More than 50% felt that they did not have sufficient information about PD and half of all participants felt that more information would reduce their feelings of uncertainty and insecurity. PD has a marked effect on the well-being of the adult and adolescent children of patients. The difficulties of children of parents with PD should receive greater attention.
我们评估了帕金森病（PD）对患者青春期及成年子女幸福感的影响。89名年龄在12至48岁之间的参与者完成了一系列关于生活质量（QoL）和心理社会变量的问卷调查。五分之一的参与者有轻度至中度抑郁，在一份针对癫痫患儿的生活质量量表上，18岁以下儿童在态度、学校行为和社会支持等方面的得分与癫痫患儿相似。父母患帕金森病的影响随疾病持续时间增加。年幼儿童比年长儿童感受到更高的日常帮助负担以及对其社交互动的影响，而年长参与者报告家庭功能受损更严重。超过50%的人觉得他们没有足够的关于帕金森病的信息，并且所有参与者中有一半觉得更多信息会减少他们的不确定感和不安全感。帕金森病对患者的成年和青春期子女的幸福感有显著影响。帕金森病患者子女面临的困难应得到更多关注。
