Health-Related Quality of Life in Children and Adolescents with Hereditary Bleeding Disorders and in Children and Adolescents with Stroke: Cross-Sectional Comparison to Siblings and Peers.
Objectives. To investigate self-reported health-related quality of life (HrQoL) in children and adolescents with chronic medical conditions compared with siblings/peers. Methods. Group 1 (6 treatment centers) consisted of 74 children/adolescents aged 8-16 years with hereditary bleeding disorders (HBD), 12 siblings, and 34 peers. Group 2 (one treatment center) consisted of 70 children/adolescents with stroke/transient ischemic attack, 14 siblings, and 72 peers. HrQoL was assessed with the "revised KINDer Lebensqualitätsfragebogen" (KINDL-R) questionnaire. Multivariate analyses within groups were done by one-way ANOVA and post hoc pairwise single comparisons by Student's t-tests. Adjusted pairwise comparisons were done by hierarchical linear regressions with individuals nested within treatment centers (group 1) and by linear regressions (group 2), respectively. Results. No differences were found in multivariate analyses of self-reported HrQoL in group 1, while in group 2 differences occurred in overall wellbeing and all subdimensions. These differences were due to differences between patients and peers. After adjusting for age, gender, number of siblings, and treatment center these differences persisted regarding self-worth (p = .0040) and friend-related wellbeing (p < .001). Conclusions. In children with HBD, HrQoL was comparable to siblings and peers. In children with stroke/TIA HrQoL was comparable to siblings while peers, independently of relevant confounder, showed better self-worth and friend-related wellbeing.
Department of Anesthesiology and Intensive Care Medicine, Charité-Universitaetsmedizin Berlin, Campus Charité Mitte and Campus Virchow-Klinikum, 10117 Berlin, Germany.
Bruno
B
Neuner
Institute for Medical Psychology, University Medical Center Hamburg-Eppendorf, 20246 Hamburg, Germany.
Sylvia
S
von Mackensen
Department of Pediatric Hematology/Oncology, Charité-Universitaetsmedizin Berlin, Campus Virchow-Klinikum, 13353 Berlin, Germany.
Susanne
S
Holzhauer
Department of Pediatric Hematology/Oncology, Charité-Universitaetsmedizin Berlin, Campus Virchow-Klinikum, 13353 Berlin, Germany; Working Group Cardiovascular Magnetic Resonance, Experimental und Clinical Research Center (ECRC), Charité-Universitaetsmedizin Berlin, Campus Buch, 13125 Berlin, Germany.
Stephanie
S
Funk
Department of Internal Medicine, Angiology and Clotting Disorders, Haemophilia Treatment Centre, Vivantes Clinic Friedrichshain, 10249 Berlin, Germany.
Robert
R
Klamroth
Pediatric Thrombosis and Hemostasis Unit, Dr. von Hauner Children's Hospital, Medical Center of the University of Munich, 80337 Munich, Germany.
Karin
K
Kurnik
Department of Pediatric Hematology/Oncology, University of Münster, 48149 Münster, Germany.
Anne
A
Krümpel
Coagulation Centre Rhine-Ruhr, 47051 Duisburg, Germany.
Susan
S
Halimeh
Department of Pediatric Hematology/Oncology, University of Münster, 48149 Münster, Germany; Department of Clinical Chemistry, University Hospital Schleswig Holstein, 24105 Kiel, Germany.
Sarah
S
Reinke
Children's Hospital, Department of Pediatric Oncology and Hematology, 86156 Augsburg, Germany.
Michael
M
Frühwald
Department of Pediatric Hematology/Oncology, University of Münster, 48149 Münster, Germany; Department of Clinical Chemistry, University Hospital Schleswig Holstein, 24105 Kiel, Germany.
Ulrike
U
Nowak-Göttl
D000293:Adolescent; D001778:Blood Coagulation Disorders / Q000150:complications / Q000503:physiopathology* / Q000523:psychology; D002648:Child; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D016014:Linear Models; D008297:Male; D015999:Multivariate Analysis; D011788:Quality of Life; D035781:Siblings; D020521:Stroke / Q000150:complications / Q000503:physiopathology* / Q000523:psychology; D011795:Surveys and Questionnaires