Bullinger Monika, von Mackensen Sylvia
Institute and Policlinics of Medical Psychology, University Medical Centre Hamburg-Eppendorf (UKE).
Clin Psychol Psychother. 2008 May-Jun;15(3):164-72. doi: 10.1002/cpp.569.
Quality of life (QoL) of children with chronic conditions has received increasing attention in recent years. While frequent paediatric health conditions and life-threatening conditions are in the foreground, QoL of children with rare diseases such as haemophilia is scarce. While haemophilia-specific instruments to assess QoL in children have been developed, cross-cultural comparison of QoL and its determinants has not been addressed so far. QoL and potential psychosocial determinants such as coping were assessed in 298 paediatric haemophilia patients from six European countries demonstrating significant differences in QoL between countries. Results indicated that psychosocial predictors varied across countries, although life satisfaction and social support explained the highest proportion of variance and, moreover, superseded clinical characteristics. These findings suggest that intervention programmes should be geared towards enhancing psychosocial resources in children and adolescents with haemophilia.
近年来，慢性病患儿的生活质量（QoL）受到了越来越多的关注。虽然常见儿科健康状况和危及生命的状况备受关注，但血友病等罕见病患儿的生活质量研究却很少。虽然已经开发了评估儿童血友病生活质量的特定工具，但迄今为止尚未涉及生活质量及其决定因素的跨文化比较。对来自六个欧洲国家的298名儿科血友病患者的生活质量和潜在心理社会决定因素（如应对方式）进行了评估，结果显示各国之间的生活质量存在显著差异。结果表明，心理社会预测因素因国家而异，尽管生活满意度和社会支持解释了最大比例的方差，而且还取代了临床特征。这些发现表明，干预计划应旨在增强血友病儿童和青少年的心理社会资源。
