Disease‐specific quality‐of‐life measurement tools for haemophilia patients
- 8 October 2004
- journal article
- review article
- Published by Wiley in Haemophilia
- Vol. 10 (s4), 30-34
- https://doi.org/10.1111/j.1365-2516.2004.01004.x
Abstract
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.Keywords
This publication has 22 references indexed in Scilit:
- Development of a new disease‐specific quality‐of‐life questionnaire to adults living with haemophiliaHaemophilia, 2004
- Development of a health‐related quality of life measure for boys with haemophilia: the Canadian Haemophilia Outcomes – Kids Life Assessment Tool (CHO‐KLAT)Haemophilia, 2004
- Cost of care and quality of life for patients with hemophilia complicated by inhibitors: the COCIS Study GroupBlood, 2003
- Quality‐of‐life differences between prophylactic and on‐demand factor replacement therapy in European haemophilia patientsHaemophilia, 2002
- Clinical severity of disease, functional disability and health-related quality of life. Three-year follow-up study of 150 Finnish patients with coagulation disordersHaemophilia, 2001
- Epidemiological survey of the orthopaedic status of severe haemophilia A and B patients in FranceHaemophilia, 2000
- Assessing health‐related quality‐of‐life in individuals with haemophiliaHaemophilia, 1999
- Assessing health-related quality-of-life in patients with severe haemophilia A and BPsychology, Health & Medicine, 1999
- Socioeconomic impact of haemophilia care: results of a pilot studyHaemophilia, 1996
- Modern haemophilia treatment: medical improvements and quality of lifeJournal of Internal Medicine, 1990