Health status and health-related quality of life of children with haemophilia from six West European countries
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Health status and health-related quality of life of children with haemophilia from six West European countries. / Gringeri, A; von Mackensen, S; Auerswald, G; Bullinger, M; Perez Garrido, R; Kellermann, E; Khair, K; Lenk, H; Vicariot, M; Villar, A; Wermes, C; Haemo-QoL Study.
In: HAEMOPHILIA, Vol. 10 Suppl 1, 03.2004, p. 26-33.Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
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TY - JOUR
T1 - Health status and health-related quality of life of children with haemophilia from six West European countries
AU - Gringeri, A
AU - von Mackensen, S
AU - Auerswald, G
AU - Bullinger, M
AU - Perez Garrido, R
AU - Kellermann, E
AU - Khair, K
AU - Lenk, H
AU - Vicariot, M
AU - Villar, A
AU - Wermes, C
AU - Haemo-QoL Study
PY - 2004/3
Y1 - 2004/3
N2 - A multicentre, international, cross-sectional study was carried out in the frame of field testing of the first haemophilia-specific quality-of-life (QoL) questionnaire (Haemo-QoL). The aim of this paper is to describe health status and health care and their impact on QoL in haemophilic children in Western Europe. Children aged 4-16 years with severe haemophilia without inhibitors were enrolled by 20 centres in France, Germany, Italy, the Netherlands, Spain and the United Kingdom. Clinical information was collected by the physicians with a medical documentation form. Health-related QoL (HRQoL) of children was assessed with Haemo-QoL, available for three age groups. Clinical data were available in 318 patients, 85.5% with haemophilia A. The mean age at first bleeding was 11 months, at first joint bleed 25 months. Functional joint impairments were found in 11.3%. Prophylaxis treatment was given to 66.7% of children in whom breakthrough bleeds occurred 0.4 times a month compared to 1.1 bleeds in children receiving on-demand treatment. A significantly higher factor consumption was found only in the two younger age groups of prophylaxis patients compared to on-demand patients. HRQoL was satisfactory in this cohort: young children were impaired mainly in the dimension 'family' and 'treatment', whereas older children had higher impairments in the so-called 'social' dimensions, such as 'perceived support' and 'friends'. Health care of children in Western Europe is progressively improving with a large diffusion of home treatment and prophylaxis. This provides a high level of health status and HRQoL, being better in haemophilic adolescents on prophylaxis.
AB - A multicentre, international, cross-sectional study was carried out in the frame of field testing of the first haemophilia-specific quality-of-life (QoL) questionnaire (Haemo-QoL). The aim of this paper is to describe health status and health care and their impact on QoL in haemophilic children in Western Europe. Children aged 4-16 years with severe haemophilia without inhibitors were enrolled by 20 centres in France, Germany, Italy, the Netherlands, Spain and the United Kingdom. Clinical information was collected by the physicians with a medical documentation form. Health-related QoL (HRQoL) of children was assessed with Haemo-QoL, available for three age groups. Clinical data were available in 318 patients, 85.5% with haemophilia A. The mean age at first bleeding was 11 months, at first joint bleed 25 months. Functional joint impairments were found in 11.3%. Prophylaxis treatment was given to 66.7% of children in whom breakthrough bleeds occurred 0.4 times a month compared to 1.1 bleeds in children receiving on-demand treatment. A significantly higher factor consumption was found only in the two younger age groups of prophylaxis patients compared to on-demand patients. HRQoL was satisfactory in this cohort: young children were impaired mainly in the dimension 'family' and 'treatment', whereas older children had higher impairments in the so-called 'social' dimensions, such as 'perceived support' and 'friends'. Health care of children in Western Europe is progressively improving with a large diffusion of home treatment and prophylaxis. This provides a high level of health status and HRQoL, being better in haemophilic adolescents on prophylaxis.
KW - Adolescent
KW - Age of Onset
KW - Child
KW - Cross-Sectional Studies
KW - Europe
KW - Health Status
KW - Hemophilia A
KW - Humans
KW - Infant
KW - Quality of Life
KW - Journal Article
KW - Multicenter Study
KW - Research Support, Non-U.S. Gov't
M3 - SCORING: Journal article
C2 - 14987246
VL - 10 Suppl 1
SP - 26
EP - 33
JO - HAEMOPHILIA
JF - HAEMOPHILIA
SN - 1351-8216
ER -