测量儿科姑息治疗中的生活质量：挑战与潜在解决方案。
Measuring quality of life in pediatric palliative care: challenges and potential solutions.
机构信息
Department of Epidemiology and Health Policy Research, University of Florida, 1329 SW 16th Street, Room 5277, Gainesville, Florida 32608, USA.
出版信息
Palliat Med. 2010 Mar;24(2):175-82. doi: 10.1177/0269216309352418. Epub 2009 Dec 10.
Abstract
Annually, about 500,000 children are coping with life-limiting illnesses in the USA. Integrated pediatric palliative care program could benefit some of these children by improving their health-related quality of life (HRQOL). To measure the effect of pediatric palliative care programs on HRQOL, a valid and reliable tool must be identified. This study aimed to validate the psychometric properties of a generic HRQOL instrument, the Pediatric Quality of Life 4.0, for children with life-limiting illnesses. Analyses were conducted using telephone survey data collected from 266 parents whose Medicaid-enrolled children had life-limiting illnesses. Results of the analyses suggest the Pediatric Quality of Life 4.0 does not have valid psychometric properties for measuring HRQOL within this population. Our study documents several challenges in using the generic instrument to measure HRQOL in pediatric palliative care setting. We point out future directions to refine or develop HRQOL instruments for this population of vulnerable children.
摘要
每年，约有 50 万名儿童在美国应对危及生命的疾病。综合儿科姑息治疗方案可以通过提高儿童的健康相关生活质量（HRQOL）来使其中一些儿童受益。为了衡量儿科姑息治疗方案对 HRQOL 的影响，必须确定一个有效和可靠的工具。本研究旨在验证一种通用 HRQOL 工具——儿童生活质量 4.0（Pediatric Quality of Life 4.0）在患有危及生命疾病的儿童中的心理测量学特性。分析使用电话调查数据进行，数据来自 266 名父母，他们的医疗补助计划覆盖的孩子患有危及生命的疾病。分析结果表明，在该人群中，儿童生活质量 4.0 并不具有有效的心理测量学特性来衡量 HRQOL。我们的研究记录了在儿科姑息治疗环境中使用通用工具来衡量 HRQOL 时面临的几个挑战。我们指出了未来的方向，以完善或开发针对这一弱势儿童群体的 HRQOL 工具。
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