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Quality-of-life differences between prophylactic and on-demand factor replacement therapy in European haemophilia patients

Royal, S; Schramm, W; Berntorp, Erik LU ; Giangrande, P; Gringeri, A; Ludlam, C; Kroner, B and Szucs, T (2002) In Haemophilia 8(1). p.44-50
Abstract
The European Study on the Clinical Outcomes and Resource Utilization associated with Haemophilia Care was designed to compare various health outcomes associated with on-demand and prophylactic factor substitution methods in European haemophilia patients. While the primary objective of this research is to conduct an economic analysis, an important component of this study is to evaluate quality-of-life differences that may exist between patients who utilize these two styles of therapy. Quality-of-life research has emerged as a primary measure of health outcomes because it allows the augmentation of traditional clinical indicators of health with data gathered from the patient's perspective. A total of 1033 haemophilia patients from 16... (More)
The European Study on the Clinical Outcomes and Resource Utilization associated with Haemophilia Care was designed to compare various health outcomes associated with on-demand and prophylactic factor substitution methods in European haemophilia patients. While the primary objective of this research is to conduct an economic analysis, an important component of this study is to evaluate quality-of-life differences that may exist between patients who utilize these two styles of therapy. Quality-of-life research has emerged as a primary measure of health outcomes because it allows the augmentation of traditional clinical indicators of health with data gathered from the patient's perspective. A total of 1033 haemophilia patients from 16 European haemophilia treatment centres were enrolled in this study. The SF-36, a multidimensional quality-of-life instrument, was administered to all participants. This instrument measures eight health-related quality-of-life dimensions: physical functioning, physical role limitations, bodily pain, general health, vitality, social functioning, emotional role limitations, and mental health. All haemophilia subjects enrolled in the study scored significantly lower than the population normative means in the three physical dimensions and in the general health dimension. HIV-negative haemophiliac subjects differed significantly by factor substitution type in a multivariate analysis examining all eight health dimensions. Univariate analyses testing each dimension separately indicated that patients treated prophylactically reported significantly less bodily pain, better general health, and scored significantly higher in the physical functioning, mental health, and social functioning dimensions. While these results suggest that health-related quality-of-life may be better for haemophilia patients treated prophylactically, future prospective studies that gather periodic quality-of-life data over time should be conducted. (Less)
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author
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
SF-36, quality of life, prophylaxis, haemophilia, on-demand therapy
in
Haemophilia
volume
8
issue
1
pages
44 - 50
publisher
Federation of European Neuroscience Societies and Blackwell Publishing Ltd
external identifiers
  • wos:000174696500007
  • pmid:11886464
  • scopus:0036207230
ISSN
1351-8216
DOI
10.1046/j.1365-2516.2002.00581.x
language
English
LU publication?
yes
id
61cd7f3c-e458-4fd7-a005-16febaaeb355 (old id 893658)
date added to LUP
2008-01-18 16:04:36
date last changed
2017-11-12 03:32:01
@article{61cd7f3c-e458-4fd7-a005-16febaaeb355,
  abstract     = {The European Study on the Clinical Outcomes and Resource Utilization associated with Haemophilia Care was designed to compare various health outcomes associated with on-demand and prophylactic factor substitution methods in European haemophilia patients. While the primary objective of this research is to conduct an economic analysis, an important component of this study is to evaluate quality-of-life differences that may exist between patients who utilize these two styles of therapy. Quality-of-life research has emerged as a primary measure of health outcomes because it allows the augmentation of traditional clinical indicators of health with data gathered from the patient's perspective. A total of 1033 haemophilia patients from 16 European haemophilia treatment centres were enrolled in this study. The SF-36, a multidimensional quality-of-life instrument, was administered to all participants. This instrument measures eight health-related quality-of-life dimensions: physical functioning, physical role limitations, bodily pain, general health, vitality, social functioning, emotional role limitations, and mental health. All haemophilia subjects enrolled in the study scored significantly lower than the population normative means in the three physical dimensions and in the general health dimension. HIV-negative haemophiliac subjects differed significantly by factor substitution type in a multivariate analysis examining all eight health dimensions. Univariate analyses testing each dimension separately indicated that patients treated prophylactically reported significantly less bodily pain, better general health, and scored significantly higher in the physical functioning, mental health, and social functioning dimensions. While these results suggest that health-related quality-of-life may be better for haemophilia patients treated prophylactically, future prospective studies that gather periodic quality-of-life data over time should be conducted.},
  author       = {Royal, S and Schramm, W and Berntorp, Erik and Giangrande, P and Gringeri, A and Ludlam, C and Kroner, B and Szucs, T},
  issn         = {1351-8216},
  keyword      = {SF-36,quality of life,prophylaxis,haemophilia,on-demand therapy},
  language     = {eng},
  number       = {1},
  pages        = {44--50},
  publisher    = {Federation of European Neuroscience Societies and Blackwell Publishing Ltd},
  series       = {Haemophilia},
  title        = {Quality-of-life differences between prophylactic and on-demand factor replacement therapy in European haemophilia patients},
  url          = {http://dx.doi.org/10.1046/j.1365-2516.2002.00581.x},
  volume       = {8},
  year         = {2002},
}