荷兰成年视网膜母细胞瘤幸存者的生活质量。
Quality of life of adult retinoblastoma survivors in the Netherlands.
作者信息
van Dijk Jennifer, Imhof Saskia M, Moll Annette C, Ringens Peter J, Cohen-Kettenis Peggy T, Rijmen Frank, Huisman Jaap
机构信息
Department of Medical Psychology, VU University Medical Center Amsterdam, The Netherlands.
出版信息
Health Qual Life Outcomes. 2007 Jun 4;5:30. doi: 10.1186/1477-7525-5-30.
BACKGROUND
To assess the quality of life (QoL) and predictors thereof in Dutch adult hereditary and non-hereditary retinoblastoma (RB) survivors.
METHODS
In this population-based cross-sectional study, a generic QoL questionnaire (SF-36) and a disease-specific interview were administered to 87 adult RB survivors aged 18 to 35 years. Their QoL data were compared with those of a Dutch healthy reference group. Among the RB hereditary/non-hereditary survivors, the QoL was compared and predictors for QoL were identified by linear multiple regression analyses.
RESULTS
As a group, RB survivors scored significantly lower than the reference group on the SF-36 subscale 'mental health' (t = -27, df = 86, p < 0.01). Hereditary RB survivors scored lower on the subscale 'general health' (t = 2.6, df = 85, p < 0.01) than non-hereditary RB survivors. Having experienced bullying, as a child was a predictor for the SF-36 subscales: 'physical functioning' (p < 0.05), 'role functioning physical' (p < 0.01), 'role functioning emotional' (p < 0.05) and 'social functioning' (p < 0.01). Having experienced bullying (p < 0.01), but also subjective experience of impairment related to RB (p < 0.05), was predictors for 'general health'. Subjective experience of impairment was a predictor for 'vitality' (p < 0.01) and 'bodily pain' (p < 0.01).
CONCLUSION
In this exploratory study, it appears that the group of adult RB survivors experience a relatively good overall but slightly decreased QoL compared with the reference group. However, they report more problems with regard to their mental health (anxiety, feelings of depression, and loss of control). Hereditary RB survivors differ significantly from non-hereditary RB survivors only in 'general health'. Bullying in childhood and subjective experience of impairment are the main predictors of a worse QoL. In order to prevent worsening of QoL, or perhaps to improve it, clinicians should make an inventory of these issues at an early stage. We recommend further research to assess the specific psychological factors that may lead to mental health problems in this population.
背景
评估荷兰成年遗传性和非遗传性视网膜母细胞瘤（RB）幸存者的生活质量（QoL）及其预测因素。
方法
在这项基于人群的横断面研究中，对87名年龄在18至35岁的成年RB幸存者进行了一份通用生活质量问卷（SF - 36）和一项特定疾病访谈。将他们的生活质量数据与荷兰健康对照组的数据进行比较。在RB遗传性/非遗传性幸存者中，比较生活质量，并通过线性多元回归分析确定生活质量的预测因素。
结果
作为一个群体，RB幸存者在SF - 36子量表“心理健康”上的得分显著低于对照组（t = -27，自由度 = 86，p < 0.01）。遗传性RB幸存者在“总体健康”子量表上的得分（t = 2.6，自由度 = 85，p < 0.01）低于非遗传性RB幸存者。童年时期曾遭受欺凌是SF - 36子量表“身体功能”（p < 0.05）、“身体角色功能”（p < 0.01）、“情感角色功能”（p < 0.05）和“社会功能”（p < 0.01）的预测因素。曾遭受欺凌（p < 0.01）以及与RB相关的主观功能损害体验（p < 0.05）是“总体健康”的预测因素。主观功能损害体验是“活力”（p < 0.01）和“身体疼痛”（p < 0.01）的预测因素。
结论
在这项探索性研究中，成年RB幸存者群体总体上似乎经历了相对良好但与对照组相比略有下降的生活质量。然而，他们报告在心理健康方面（焦虑、抑郁情绪和失控感）存在更多问题。遗传性RB幸存者与非遗传性RB幸存者仅在“总体健康”方面存在显著差异。童年时期的欺凌和主观功能损害体验是生活质量较差的主要预测因素。为了防止生活质量恶化或可能改善生活质量，临床医生应在早期阶段对这些问题进行评估。我们建议进一步开展研究，以评估可能导致该人群心理健康问题的具体心理因素。
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