Patient-focused measures of functional health status and health-related quality of life in pediatric orthopedics: a case study in measurement selection.
Patient-focused measures of functional health status and health-related quality of life in pediatric orthopedics: a case study in measurement selection.
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DOI：
10.1186/1477-7525-3-3
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发表时间：
2005-01-12
影响因子：
3.6
通讯作者：
Yandow, Suzanne
中科院分区：
文献类型：
--
作者：
Furlong, William;Barr, Ronald D;Yandow, Suzanne
本报告的目的是回顾以患者为中心的儿童骨科手术结果的评估，描述一个框架，以确定适当的措施集，并说明一个具有挑战性的骨科问题的框架的应用程序。这些因素对于选择适当的工具来测量特定背景下的健康状况和健康相关生活质量（HRQL）非常重要。一项评估1型神经纤维瘤病和先天性胫骨发育不良（NF 1-CTD）患者治疗方案的研究为该框架的应用提供了丰富的例证。该应用涉及仪器选择因素的巨大可变性。此外，这些患者及其支持性护理人员面临着许多复杂的健康挑战，对HRQL具有长期影响。详细总结了重要的通用偏好为基础的多属性测量系统，儿科健康档案仪器，和儿科骨科专用仪器。为NF 1-CTD患者的研究确定了适当的通用和特定措施。所选的指标包括儿童活动量表、吉列功能评估问卷步行量表、健康效用指数和儿童生活质量量表。为小儿骨科的应用提供了可靠有效的措施。各种措施之间存在着重大差异。选定的措施相辅相成。本报告的框架为选择适当措施提供了指导。应用适当的措施将提高描述儿科骨科患者发病率和评估替代临床干预措施有效性的能力。从患者角度衡量健康状况和HRQL的框架与骨科实践的许多其他领域相关。
The objectives of this report are to review the assessment of patient-focused outcomes in pediatric orthopedic surgery, to describe a framework for identifying appropriate sets of measures, and to illustrate an application of the framework to a challenging orthopedic problem.A detailed framework of study design and measurement factors is described. The factors are important for selecting appropriate instruments to measure health status and health-related quality of life (HRQL) in a particular context. A study to evaluate treatment alternatives for patients with neurofibromatosis type 1 and congenital tibial dysplasia (NF1-CTD) provides a rich illustration of the application of the framework. The application involves great variability in the instrument selection factors. Furthermore, these patients and their supportive caregivers face numerous complex health challenges with long-term implications for HRQL. Detailed summaries of important generic preference-based multi-attribute measurement systems, pediatric health profile instruments, and pediatric orthopedic-specific instruments are presented. Age-appropriate generic and specific measures are identified for study of NF1-CTD patients. Selected measures include the Activities Scale for Children, Gillette Functional Assessment Questionnaire Walking Scale, Health Utilities Index, and Pediatric Inventory of Quality of Life. Reliable and valid measures for application to pediatric orthopedics are available. There are important differences among measures. The selected measures complement each other. The framework in this report provides a guide for selecting appropriate measures. Application of appropriate sets of measures will enhance the ability to describe the morbidity of pediatric orthopedic patients and to assess the effectiveness of alternative clinical interventions. The framework for measurement of health status and HRQL from a patient perspective has relevance to many other areas of orthopedic practice.