TY - JOUR
T1 - Health-related quality of life in children, adolescents and adults with hereditary and acquired bleeding disorders
AU - Nowak-Göttl, Ulrike
AU - Clausnizer, Hartmut
AU - Kowalski, Dorothee
AU - Limperger, Verena
AU - Krümpel, Anne
AU - Shneyder, Maria
AU - Reinke, Sarah
AU - Rocke, Angela
AU - Juhl, David
AU - Steppat, Dagmar
AU - Krause, Manuela
N1 - Funding Information:
Conflicts of interest and source of funding: For the authors none were declared. This study was financed by unrestricted grants from Biotest AG , Langen, Germany to Ulrike Nowak-Göttl.
Publisher Copyright:
© 2016 Elsevier Inc.
Copyright:
Copyright 2020 Elsevier B.V., All rights reserved.
PY - 2017/9
Y1 - 2017/9
N2 - Background To better understand self-reported health-related quality-of-life (HrQoL) in children and adults with chronic hemostatic conditions compared with healthy controls. Methods/patients/results Group 1 consisted of 74 children/adolescents aged 8–18 years with hereditary bleeding disorders (H-BD), 12 siblings and 34 peers. Group 2 consisted of 82 adult patients with hereditary/acquired bleeding disorders (H/A-BD), and group 3 of 198 patients with deep venous thrombosis (DVT) on anticoagulant therapy. Adult patients were compared to 1011 healthy blood donors. HrQoL was assessed with a ‘revised KINDer Lebensqualitaetsfragebogen’ (KINDL-R)-questionnaire adapted to adolescents and adults. No differences were found in multivariate analyses of self-reported HrQoL in children with H-BD. In contrast, apart from family and school-/work-related wellbeing in female patients with DVT the adult patients showed significantly lower HrQoL sub-dimensions compared to heathy control subjects. Furthermore, adults with H/A-BD disorders reported better friend-related HrQoL compared to patients with DVT, mainly due to a decreased HrQoL subscale in women on anticoagulation. Conclusion In children with H-BD, HrQoL was comparable to siblings and peers. In adults with H/A-BD HrQoL was comparable to patients with DVT while healthy blood donors showed better HrQoL. The friend-related HrQoL subscale was significantly reduced in female compared to male patients.
AB - Background To better understand self-reported health-related quality-of-life (HrQoL) in children and adults with chronic hemostatic conditions compared with healthy controls. Methods/patients/results Group 1 consisted of 74 children/adolescents aged 8–18 years with hereditary bleeding disorders (H-BD), 12 siblings and 34 peers. Group 2 consisted of 82 adult patients with hereditary/acquired bleeding disorders (H/A-BD), and group 3 of 198 patients with deep venous thrombosis (DVT) on anticoagulant therapy. Adult patients were compared to 1011 healthy blood donors. HrQoL was assessed with a ‘revised KINDer Lebensqualitaetsfragebogen’ (KINDL-R)-questionnaire adapted to adolescents and adults. No differences were found in multivariate analyses of self-reported HrQoL in children with H-BD. In contrast, apart from family and school-/work-related wellbeing in female patients with DVT the adult patients showed significantly lower HrQoL sub-dimensions compared to heathy control subjects. Furthermore, adults with H/A-BD disorders reported better friend-related HrQoL compared to patients with DVT, mainly due to a decreased HrQoL subscale in women on anticoagulation. Conclusion In children with H-BD, HrQoL was comparable to siblings and peers. In adults with H/A-BD HrQoL was comparable to patients with DVT while healthy blood donors showed better HrQoL. The friend-related HrQoL subscale was significantly reduced in female compared to male patients.
UR - http://www.scopus.com/inward/record.url?scp=85006752677&partnerID=8YFLogxK
U2 - 10.1016/j.bcmd.2016.11.010
DO - 10.1016/j.bcmd.2016.11.010
M3 - Journal articles
C2 - 27865683
AN - SCOPUS:85006752677
SN - 1079-9796
VL - 67
SP - 96
EP - 101
JO - Blood Cells, Molecules, and Diseases
JF - Blood Cells, Molecules, and Diseases
ER -
