Sheppard Linda, Eiser Christine, Kingston Judith
CR-UK Child and Family Health Group, Department of Psychology, University of Sheffield, Western Bank, Sheffield, UK.
Child Care Health Dev. 2005 Mar;31(2):137-42. doi: 10.1111/j.1365-2214.2005.00498.x.
We describe the Quality of Life (QoL) and IQ of survivors of retinoblastoma (Rb), both in relation to the normal population and between subgroups of Rb patients differing in relative risk (i.e. unilateral vs. bilateral disease). The sample included 54 children (28 males, age-range 8-16 years) and their mothers. Mothers completed standardized questionnaires to report their own QoL and that of their child. Children completed a brief IQ test. Compared with population norms, mothers reported lower levels of QoL for their child on total QoL and for sub-scales measuring Physical and Psychosocial function. Mothers reported their own QoL to be comparable or higher than norms on all but one of eight sub-scales (energy/vitality). Compared with population norms, children with no visual impairment scored in the normal range for tasks measuring Verbal IQ, but below the mean on tasks measuring Performance IQ. According to their mothers, survivors of Rb have excellent school attendance and take part in most school activities. However, based on standardized questionnaire, they show compromised QoL. We consider that excellent survival rates in Rb are matched with good QoL according to mothers' report.
我们描述了视网膜母细胞瘤（Rb）幸存者的生活质量（QoL）和智商，既与正常人群进行了比较，也在相对风险不同的Rb患者亚组（即单侧疾病与双侧疾病）之间进行了比较。样本包括54名儿童（28名男性，年龄范围8至16岁）及其母亲。母亲们填写标准化问卷，报告她们自己以及孩子的生活质量。孩子们完成了一项简短的智商测试。与人群常模相比，母亲们报告孩子在总体生活质量以及测量身体和心理社会功能的子量表上的生活质量水平较低。母亲们报告自己在八个子量表（精力/活力除外）中的七个上的生活质量与常模相当或更高。与人群常模相比，无视力障碍的儿童在测量言语智商的任务中得分在正常范围内，但在测量操作智商的任务中低于平均水平。据母亲们说，Rb幸存者的学校出勤率很高，并且参加大多数学校活动。然而，根据标准化问卷，他们的生活质量受到了影响。我们认为，根据母亲们的报告，Rb患者出色的生存率与良好的生活质量相匹配。
