Jonkoping University, The Jonkoping Academy for Improvement of Health and Welfare, Box 1026, s-55111 Jonkoping, Sweden.
Health Qual Life Outcomes. 2013 May 4;11:75. doi: 10.1186/1477-7525-11-75.
Children with chronic conditions often experience a long treatment which can be complex and negatively impacts the child's well-being. In planning treatment and interventions for children with chronic conditions, it is important to measure health-related quality of life (HrQoL). HrQoL instruments are considered to be a patient-reported outcome measure (PROM) and should be used in routine practice.
The aim of this study was to compare the content dimensions of HrQoL instruments for children's self-reports using the framework of ICF-CY.
The sample consist of six instruments for health-related quality of life for children 5 to 18 years of age, which was used in the Swedish national quality registries for children and adolescents with chronic conditions. The following instruments were included: CHQ-CF, DCGM-37, EQ-5D-Y, KIDSCREEN-52, Kid-KINDL and PedsQL 4.0. The framework of the ICF-CY was used as the basis for the comparison.
There were 290 meaningful concepts identified and linked to 88 categories in the classification ICF-CY with 29 categories of the component body functions, 48 categories of the component activities and participation and 11 categories of the component environmental factors. No concept were linked to the component body structures. The comparison revealed that the items in the HrQoL instruments corresponded primarily with the domains of activities and less with environmental factors.
In conclusion, the results confirm that ICF-CY provide a good framework for content comparisons that evaluate similarities and differences to ICF-CY categories. The results of this study revealed the need for greater consensus of content across different HrQoL instruments. To obtain a detailed description of children's HrQoL, DCGM-37 and KIDSCREEN-52 may be appropriate instruments to use that can increase the understanding of young patients' needs.
患有慢性疾病的儿童通常需要接受长期治疗，而这种治疗可能既复杂又会对儿童的健康产生负面影响。在为患有慢性疾病的儿童规划治疗和干预措施时，衡量与健康相关的生活质量（HRQoL）非常重要。HRQoL 工具被认为是一种患者报告的结果测量（PROM），应在常规实践中使用。
本研究的目的是使用国际功能、残疾和健康分类儿童及青少年版（ICF-CY）框架比较儿童自我报告的 HRQoL 工具的内容维度。
该样本包括用于评估 5 至 18 岁患有慢性疾病的儿童和青少年的健康相关生活质量的 6 种工具，这些工具被用于瑞典全国儿童和青少年慢性病质量登记处。纳入的工具包括：CHQ-CF、DCGM-37、EQ-5D-Y、KIDSCREEN-52、Kid-KINDL 和 PedsQL 4.0。该研究使用 ICF-CY 框架作为比较的基础。
共确定了 290 个有意义的概念，并与 ICF-CY 的 88 个类别相关联，其中包含 29 个身体功能组成部分类别、48 个活动和参与组成部分类别以及 11 个环境因素组成部分类别。没有概念与身体结构组成部分类别相关联。比较结果表明，HRQoL 工具中的项目主要与活动领域相对应，而与环境因素的对应较少。
总之，结果证实 ICF-CY 为内容比较提供了一个很好的框架，可用于评估与 ICF-CY 类别之间的相似性和差异性。本研究的结果表明，不同 HRQoL 工具之间需要更大的内容一致性。为了更详细地描述儿童的 HRQoL，使用 DCGM-37 和 KIDSCREEN-52 可能是合适的工具，可以增加对年轻患者需求的理解。
