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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, Jahrgang 10 Suppl 1, 03.2004, S. 26-33.

Publikationen: SCORING: Beitrag in Fachzeitschrift/Zeitung › SCORING: Zeitschriftenaufsatz › Forschung › Begutachtung

Harvard

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 2004, 'Health status and health-related quality of life of children with haemophilia from six West European countries', HAEMOPHILIA, Jg. 10 Suppl 1, S. 26-33.

APA

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 (2004). Health status and health-related quality of life of children with haemophilia from six West European countries. HAEMOPHILIA, 10 Suppl 1, 26-33.

Vancouver

Gringeri A, von Mackensen S, Auerswald G, Bullinger M, Perez Garrido R, Kellermann E et al. Health status and health-related quality of life of children with haemophilia from six West European countries. HAEMOPHILIA. 2004 Mär;10 Suppl 1:26-33.

Bibtex

@article{1a2467ff8f034c3794c0120cbdc06d6f,
title = "Health status and health-related quality of life of children with haemophilia from six West European countries",
abstract = "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.",
keywords = "Adolescent, Age of Onset, Child, Cross-Sectional Studies, Europe, Health Status, Hemophilia A, Humans, Infant, Quality of Life, Journal Article, Multicenter Study, Research Support, Non-U.S. Gov't",
author = "A Gringeri and {von Mackensen}, S and G Auerswald and M Bullinger and {Perez Garrido}, R and E Kellermann and K Khair and H Lenk and M Vicariot and A Villar and C Wermes and {Haemo-QoL Study}",
year = "2004",
month = mar,
language = "English",
volume = "10 Suppl 1",
pages = "26--33",
journal = "HAEMOPHILIA",
issn = "1351-8216",
publisher = "Wiley-Blackwell",

}

RIS

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 -