Huang I-Chan, Wen Pey-Shan, Revicki Dennis A, Shenkman Elizabeth A
Departments of Health Outcomes and Policy, and the Institute for Child Health Policy, University of Florida, 1329 SW 16th Street, Room 5277, Gainesville, FL 32608, USA.
Child Indic Res. 2011 Jan;4(1):145-160. doi: 10.1007/s12187-010-9079-x.
About 500,000 children are coping with life-threatening conditions (LTC) in the United States every year. Different service programs such as an integrated pediatric palliative care program may benefit health-related quality of life (HRQOL) which is a great concern of this children population and their families. However, evidence is limited about the appropriate HRQOL instruments for use. This study aims to validate psychometric properties of a generic HRQOL instrument, the Pediatric Quality of Life (PedsQL) 4.0, for children with LTC. The parent proxy-report was used. We conducted a telephone interview to collect data of 257 parents whose children had LTC and were enrolled in Medicaid. We used standard psychometric methods to validate the PedsQL: scale reliability, item-domain convergent/discriminant validity, and known-groups validity. We also conducted Rasch analysis to assess construct validity. Results suggest that the PedsQL did not demonstrate valid psychometric properties for measuring HRQOL in this population. Rasch analysis suggests that the contents of the items in all domains did not appropriately cover the latent HRQOL of children with LTC. We document several methodological challenges in using a generic instrument to measuring HRQOL and propose a new framework to improve HRQOL measures for children with LTC. The strategies include revising the content of existing items, designing new items, adding important themes (e.g., financial challenge), and applying computerized adaptive test to better select appropriate items for individual children with LTC.
在美国，每年约有50万名儿童在应对危及生命的疾病（LTC）。不同的服务项目，如综合儿科姑息治疗项目，可能会改善与健康相关的生活质量（HRQOL），这是这一儿童群体及其家庭极为关注的问题。然而，关于适用的HRQOL测量工具的证据有限。本研究旨在验证一种通用的HRQOL测量工具——儿童生活质量量表（PedsQL）4.0版——在患有LTC的儿童中的心理测量特性。采用家长代理报告法。我们通过电话访谈收集了257名儿童患有LTC且已加入医疗补助计划的家长的数据。我们使用标准的心理测量方法来验证PedsQL：量表信度、条目-领域的收敛效度/区分效度以及已知群体效度。我们还进行了拉施分析以评估结构效度。结果表明，PedsQL在测量该人群的HRQOL时未显示出有效的心理测量特性。拉施分析表明，所有领域条目的内容均未适当涵盖患有LTC的儿童的潜在HRQOL。我们记录了使用通用工具测量HRQOL时的几个方法学挑战，并提出了一个新框架以改进对患有LTC的儿童的HRQOL测量。这些策略包括修改现有条目的内容、设计新条目、添加重要主题（如经济挑战），以及应用计算机自适应测试以更好地为患有LTC的个体儿童选择合适的条目。
