Measuring patient-reported outcomes in haemophilia clinical research

被引：16

作者：

Globe, D. ^{[1
]}

Young, N. L. ^{[2
]}

Von Mackensen, S. ^{[3
]}

Bullinger, M. ^{[3
]}

Wasserman, J. ^{[4
]}

机构：

[1] Amgen Inc, Thousand Oaks, CA 91320 USA

[2] Laurentian Univ, Sch Med, Sudbury, ON P3E 2C6, Canada

[3] Univ Med Ctr Hamburg Eppendorf, Inst Med Psychol, Hamburg, Germany

[4] Univ Texas Hlth Sci Ctr Houston, Sch Nursing, Ctr Aging, Houston, TX USA

来源：

HAEMOPHILIA | 2009年 / 15卷 / 04期

关键词：

factor VIII; haemophilia; health status; primary prophylaxis; quality of life; utility; QUALITY-OF-LIFE; HEALTH STATE PREFERENCES; CANADIAN HEMOPHILIA; SOCIAL PREFERENCES; CHILDREN; QUESTIONNAIRE; ADULTS; BOYS; QOL; INDIVIDUALS;

D O I：

10.1111/j.1365-2516.2008.01961.x

中图分类号：

R5 [内科学];

学科分类号：

1002 ; 100201 ;

摘要：

Patient-reported outcome (PRO) measures have been used to assess quality of life and health state preferences from the patient's perspective. However, they have not been fully utilized in haemophilia clinical practice and research. A series of meetings were convened to review and document the state of the art in PROs relevant to haemophilia. Experts developed a process for selection of measures and identified published measures of health-related quality of life (HRQoL) relevant to patients with haemophilia. These were synthesized and reviewed. Patient preference measures were also identified and reviewed. Although the majority of measures were developed for and validated in adults, several measures were identified for use in paediatric populations. This paper recommends an approach to the selection of PROs for application in haemophilia clinical research and practice and identifies several potential measures relevant for application in haemophilia clinical research and practice.

引用

页码：843 / 852

页数：10

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