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, Jahrgang 25 Suppl 1, 12.2003, S. S64-7.Publikationen: SCORING: Beitrag in Fachzeitschrift/Zeitung › SCORING: Zeitschriftenaufsatz › Forschung › Begutachtung
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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 -