Health-related quality of life in children, adolescents and adults with hereditary and acquired bleeding disorders

Ulrike Nowak-Göttl*, Hartmut Clausnizer, Dorothee Kowalski, Verena Limperger, Anne Krümpel, Maria Shneyder, Sarah Reinke, Angela Rocke, David Juhl, Dagmar Steppat, Manuela Krause

*Corresponding author for this work
2 Citations (Scopus)


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.

Original languageEnglish
JournalBlood Cells, Molecules, and Diseases
Pages (from-to)96-101
Number of pages6
Publication statusPublished - 09.2017


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