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一项关于儿童急性淋巴细胞白血病健康相关生活质量及经济评估研究的结构化综述。

A structured review of studies on health-related quality of life and economic evaluation in pediatric acute lymphoblastic leukemia.

作者信息

Pickard A Simon, Topfer Leigh-Ann, Feeny David H

机构信息

Department of Pharmacy Practice, College of Pharmacy, University of Illinois at Chicago, USA.

出版信息

J Natl Cancer Inst Monogr. 2004(33):102-25. doi: 10.1093/jncimonographs/lgh002.

Abstract

BACKGROUND

A comprehensive review was made of the literature on the health-related quality of life (HRQL) and economic outcomes of children with acute lymphoblastic leukemia (ALL), the most common of all cancers in childhood.

OBJECTIVES

The primary objectives of the review were to locate and describe measures of HRQL used in pediatrics and in pediatric oncology that might be applicable to ALL, to summarize studies that have applied HRQL measures to ALL, to identify and summarize economic evaluations of the costs and consequences of care for pediatric ALL, and to identify areas requiring further research.

DATA SOURCES

To identify the HRQL literature in pediatric ALL, searches were run on the major biomedical and social science bibliographic databases. Search terms included a variety of MeSH and other thesaurus terms, text words, names of HRQL instruments, and the names of key authors in the field. The economic literature searches included most of the same databases, with the addition of the National Health Service Economic Evaluation Database and EconLit. Searches on specific authors and instruments and hand searches were also conducted.

STUDY SELECTION

Only English language studies published from 1975 through 2000 were included.

DATA EXTRACTION

Standardized data extraction forms were used to abstract information from HRQL and economic evaluation studies. Two reviewers independently screened the search results, and differences were resolved by consensus.

DATA SYNTHESIS

A number of generic HRQL measures, both adult and pediatric, have been applied in pediatric ALL. In addition, a number of pediatric oncology-specific instruments and pediatric oncology disease-specific instruments have been developed. Most of these instruments have been used to measure the health status of patients undergoing therapy. Despite the limited numbers of patients and resources available to assess HRQL measures in children with cancer, a fairly substantial body of literature has been published. Economic studies of pediatric ALL have only recently been undertaken. Most studies focus on a particular, narrow aspect of costs associated with the disease. There are relatively few cost-effectiveness studies that compare the costs and consequences of two or more treatment options. There are no published, comprehensive economic evaluations of pediatric ALL.

CONCLUSIONS

HRQL measures provide not only important information on the improvements offered by new therapies but also an outcome measure for economic evaluations. Recently developed HRQL measures and applications that include the direct assessments of children are important contributions. By the age of 7 or 8 years, children can generally provide reliable responses. Furthermore, children often provide information that is not available from parental reports (e.g., in the more subjective areas of pain and emotion). However, the use of multiple viewpoints, such as the patient, parent, and health professional perspectives, can provide valid and important complementary information. Expertise in HRQL measurement should be included in the design of most future trials. Funds for HRQL research should be made available to enhance the scope of HRQL activities by organizations such as the Children's Oncology Group. In the near future, further work to generate evidence of validity for available HRQL measures for use in children with ALL will be a high priority. Continuation of inquiries into the methods for HRQL assessment of younger children (i.e., preschoolers) is also a priority.

摘要

背景

对有关儿童急性淋巴细胞白血病(ALL,儿童期最常见的癌症)的健康相关生活质量(HRQL)和经济结果的文献进行了全面综述。

目的

该综述的主要目的是查找和描述儿科及儿科肿瘤学中可能适用于ALL的HRQL测量方法,总结已将HRQL测量方法应用于ALL的研究,识别并总结对儿科ALL护理成本和后果的经济评估,以及确定需要进一步研究的领域。

数据来源

为查找儿科ALL中的HRQL文献,在主要的生物医学和社会科学文献数据库中进行了检索。检索词包括各种医学主题词(MeSH)和其他叙词、文本词、HRQL工具名称以及该领域关键作者的姓名。经济文献检索包括大多数相同的数据库,另外还增加了国家卫生服务经济评估数据库和EconLit。还对特定作者和工具进行了检索以及手工检索。

研究选择

仅纳入1975年至2000年发表的英文研究。

数据提取

使用标准化的数据提取表从HRQL和经济评估研究中提取信息。两名评审员独立筛选检索结果,分歧通过协商解决。

数据综合

一些通用的HRQL测量方法,包括成人和儿科的,已应用于儿科ALL。此外,还开发了一些儿科肿瘤学专用工具和儿科肿瘤疾病专用工具。这些工具大多用于测量接受治疗患者的健康状况。尽管评估癌症儿童HRQL测量方法的患者数量和资源有限,但已发表了相当多的文献。儿科ALL的经济研究直到最近才开展。大多数研究关注与该疾病相关成本的特定、狭窄方面。比较两种或更多治疗方案成本和后果有效的成本效益研究相对较少。目前尚无已发表的关于儿科ALL的全面经济评估。

结论

HRQL测量方法不仅提供了有关新疗法带来改善的重要信息,还为经济评估提供了一种结果测量方法。最近开发的包括对儿童直接评估的HRQL测量方法和应用是重要贡献。到7或8岁时,儿童通常能够提供可靠的回答。此外,儿童常常提供父母报告中没有的信息(例如,在疼痛和情绪等更主观的方面)。然而,采用多种观点,如患者、父母和卫生专业人员的观点,可以提供有效且重要的补充信息。大多数未来试验的设计应纳入HRQL测量方面的专业知识。儿童肿瘤学组等组织应提供HRQL研究资金,以扩大HRQL活动的范围。在不久的将来,为ALL患儿可用的HRQL测量方法生成有效性证据的进一步工作将是高度优先事项。对年幼儿童(即学龄前儿童)HRQL评估方法继续进行探究也是一个优先事项。

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