Jonsson Ulf, Alaie Iman, Löfgren Wilteus Anna, Zander Eric, Marschik Peter B, Coghill David, Bölte Sven
Neuropsychiatry Unit, Department of Women's and Children's Health, Center of Neurodevelopmental Disorders (KIND), Karolinska Institutet, Stockholm, Sweden.
Child and Adolescent Psychiatry, Center of Psychiatry Research, Stockholm County Council, Stockholm, Sweden.
J Child Psychol Psychiatry. 2017 Apr;58(4):439-469. doi: 10.1111/jcpp.12645. Epub 2016 Oct 6.
An individual's subjective perception of well-being is increasingly recognized as an essential complement to clinical symptomatology and functional impairment in children's mental health. Measurement of quality of life (QoL) has the potential to give due weight to the child's perspective.
Our aim was to critically review the current evidence on how childhood mental disorders affect QoL. First, the major challenges in this research field are outlined. Then we present a systematic review of QoL in children and adolescents aged 0-18 years formally diagnosed with a mental and behavioural disorder, as compared to healthy or typically developing children or children with other health conditions. Finally, we discuss limitations of the current evidence base and future directions based on the results of the systematic review and other relevant literature.
The systematic review identified 41 eligible studies. All were published after the year 2000 and 21 originated in Europe. The majority examined QoL in neurodevelopmental disorders, including attention-deficit hyperactivity disorder (k = 17), autism spectrum disorder (k = 6), motor disorders (k = 5) and intellectual disability (k = 4). Despite substantial heterogeneity, studies demonstrate that self-reported global QoL is significantly reduced compared to typical/healthy controls across several disorders and QoL dimensions. Parents' ratings were on average substantially lower, casting doubt on the validity of proxy-report. Studies for large diagnostic groups such as depressive disorders, anxiety disorders, (early onset) schizophrenia and eating disorders are largely lacking. We conclude that representative, well-characterized normative and clinical samples as well as longitudinal and qualitative designs are needed to further clarify the construct of QoL, to derive measures of high ecological validity, and to examine how QoL fluctuates over time and is attributable to specific conditions or contextual factors.
个体对幸福感的主观认知日益被视为儿童心理健康临床症状学和功能损害的重要补充。生活质量（QoL）的测量有可能充分重视儿童的观点。
我们的目的是批判性地回顾当前关于儿童精神障碍如何影响生活质量的证据。首先，概述了该研究领域的主要挑战。然后，我们对正式诊断患有精神和行为障碍的0至18岁儿童和青少年的生活质量进行了系统评价，并与健康或发育正常的儿童或患有其他健康状况的儿童进行了比较。最后，我们根据系统评价的结果和其他相关文献讨论了当前证据基础的局限性和未来方向。
系统评价确定了41项符合条件的研究。所有研究均在2000年后发表，其中21项起源于欧洲。大多数研究考察了神经发育障碍中的生活质量，包括注意力缺陷多动障碍（k = 17）、自闭症谱系障碍（k = 6）、运动障碍（k = 5）和智力残疾（k = 4）。尽管存在很大的异质性，但研究表明，在几种障碍和生活质量维度上，与典型/健康对照组相比，自我报告的总体生活质量显著降低。父母的评分平均要低得多，这使人对代理报告的有效性产生怀疑。对于抑郁症、焦虑症、（早发性）精神分裂症和饮食失调等大型诊断组的研究大多缺乏。我们得出结论，需要有代表性、特征明确的规范和临床样本以及纵向和定性设计，以进一步阐明生活质量的结构，得出具有高生态效度的测量方法，并研究生活质量如何随时间波动以及归因于特定条件或背景因素。
