Disease-specific quality-of-life measurement tools for haemophilia patients

被引：50

作者：

Remor, E

Young, NL

Von Mackensen, S

Lopatina, EG

机构：

[1] Univ Autonoma Madrid, Fac Psicol, Dept Psicol Biol & Salud, E-28049 Madrid, Spain

[2] Univ Toronto, Toronto, ON, Canada

[3] Hosp Sick Children, Toronto, ON M5G 1X8, Canada

[4] UKE Hamburg, Inst Policlin Med Psychol, Hamburg, Germany

[5] Russian Acad Med Sci, Rusian Hemophilia Ctr, Moscow, Russia

来源：

HAEMOPHILIA | 2004年 / 10卷

关键词：

adults; assessment; children; haemophilia; quality of life;

D O I：

10.1111/j.1365-2516.2004.01004.x

中图分类号：

R5 [内科学];

学科分类号：

1002 ; 100201 ;

摘要：

The purpose of this paper is to summarize the state of the art in measuring quality of life in haemophila populations. The paper reviews the measures recently included in haemophila trials in the published literature. It also summarizes the development of four new disease-specific measures of health-related quality of life. Two of these were developed for children (the Haemo-QoL and the CHO-KLAT), and two for adults (the Hemofilia-QoL and the Hemolatin-QoL). These new measures show promise for use in clinical trials. Further research is in progress to complete the psychometric testing and cross-cultural validation.

引用

页码：30 / 34

页数：5

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