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Quality of life in children and families with bleeding disorders

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Quality of life in children and families with bleeding disorders. / Bullinger, Monika; Von Mackensen, Sylvia; Haemo-QoL Group.

In: J PEDIAT HEMATOL ONC, Vol. 25 Suppl 1, 12.2003, p. S64-7.

Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

Harvard

Bullinger, M, Von Mackensen, S & Haemo-QoL Group 2003, 'Quality of life in children and families with bleeding disorders', J PEDIAT HEMATOL ONC, vol. 25 Suppl 1, pp. S64-7.

APA

Bullinger, M., Von Mackensen, S., & Haemo-QoL Group (2003). Quality of life in children and families with bleeding disorders. J PEDIAT HEMATOL ONC, 25 Suppl 1, S64-7.

Vancouver

Bullinger M, Von Mackensen S, Haemo-QoL Group. Quality of life in children and families with bleeding disorders. J PEDIAT HEMATOL ONC. 2003 Dec;25 Suppl 1:S64-7.

Bibtex

@article{bac8b7cec3724a338c7c787483f42346,
title = "Quality of life in children and families with bleeding disorders",
abstract = "Quality of life (QoL) in children and adolescents with bleeding disorders and their families is a relatively new topic. It is important to understand more about QoL in this patient population to evaluate and if necessary to improve the care patients receive. To achieve this aim, a questionnaire to assess patients' QoL in hemophilia was developed and psychometrically tested. Three hundred twenty hemophiliac children and adolescents from six European countries and their families were asked to fill out a questionnaire regarding different aspects of their well-being and functioning, as well as their views on hemophilia care. Generic QoL questionnaires showed that children with hemophilia have a higher QoL than other patients with chronic disease, such as asthma/atopic dermatitis and obesity. Several determinants affected patients' QoL (e.g., number of bleeds, social support). Parents' and children's assessments differed with regard to social and emotional aspects of QoL. The study showed that variations in QoL can be explained by clinical and psychosocial factors and suggested that QoL can be assessed and enhanced both by medical and non-medical (e.g., psychological) interventions.",
keywords = "Adaptation, Psychological, Adolescent, Adult, Asthma, Child, Dermatitis, Atopic, Europe, Health Status, Hemophilia A, Hemorrhagic Disorders, Humans, Male, Nuclear Family, Obesity, Quality of Life, Social Support, Journal Article, Multicenter Study, Research Support, Non-U.S. Gov't",
author = "Monika Bullinger and {Von Mackensen}, Sylvia and {Haemo-QoL Group}",
year = "2003",
month = dec,
language = "English",
volume = "25 Suppl 1",
pages = "S64--7",
journal = "J PEDIAT HEMATOL ONC",
issn = "1077-4114",
publisher = "Raven Press",

}

RIS

TY - JOUR

T1 - Quality of life in children and families with bleeding disorders

AU - Bullinger, Monika

AU - Von Mackensen, Sylvia

AU - Haemo-QoL Group

PY - 2003/12

Y1 - 2003/12

N2 - Quality of life (QoL) in children and adolescents with bleeding disorders and their families is a relatively new topic. It is important to understand more about QoL in this patient population to evaluate and if necessary to improve the care patients receive. To achieve this aim, a questionnaire to assess patients' QoL in hemophilia was developed and psychometrically tested. Three hundred twenty hemophiliac children and adolescents from six European countries and their families were asked to fill out a questionnaire regarding different aspects of their well-being and functioning, as well as their views on hemophilia care. Generic QoL questionnaires showed that children with hemophilia have a higher QoL than other patients with chronic disease, such as asthma/atopic dermatitis and obesity. Several determinants affected patients' QoL (e.g., number of bleeds, social support). Parents' and children's assessments differed with regard to social and emotional aspects of QoL. The study showed that variations in QoL can be explained by clinical and psychosocial factors and suggested that QoL can be assessed and enhanced both by medical and non-medical (e.g., psychological) interventions.

AB - Quality of life (QoL) in children and adolescents with bleeding disorders and their families is a relatively new topic. It is important to understand more about QoL in this patient population to evaluate and if necessary to improve the care patients receive. To achieve this aim, a questionnaire to assess patients' QoL in hemophilia was developed and psychometrically tested. Three hundred twenty hemophiliac children and adolescents from six European countries and their families were asked to fill out a questionnaire regarding different aspects of their well-being and functioning, as well as their views on hemophilia care. Generic QoL questionnaires showed that children with hemophilia have a higher QoL than other patients with chronic disease, such as asthma/atopic dermatitis and obesity. Several determinants affected patients' QoL (e.g., number of bleeds, social support). Parents' and children's assessments differed with regard to social and emotional aspects of QoL. The study showed that variations in QoL can be explained by clinical and psychosocial factors and suggested that QoL can be assessed and enhanced both by medical and non-medical (e.g., psychological) interventions.

KW - Adaptation, Psychological

KW - Adolescent

KW - Adult

KW - Asthma

KW - Child

KW - Dermatitis, Atopic

KW - Europe

KW - Health Status

KW - Hemophilia A

KW - Hemorrhagic Disorders

KW - Humans

KW - Male

KW - Nuclear Family

KW - Obesity

KW - Quality of Life

KW - Social Support

KW - Journal Article

KW - Multicenter Study

KW - Research Support, Non-U.S. Gov't

M3 - SCORING: Journal article

C2 - 14668644

VL - 25 Suppl 1

SP - S64-7

JO - J PEDIAT HEMATOL ONC

JF - J PEDIAT HEMATOL ONC

SN - 1077-4114

ER -