title: Health-related quality of life in children, adolescents and adults with hereditary and acquired bleeding disorders.
abstract: To better understand self-reported health-related quality-of-life (HrQoL) in children and adults with chronic hemostatic conditions compared with healthy controls.
  
  
  
  Group 1 consisted of 74 children/adolescents aged 8-18years 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.
  
  
  
  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.
authors.affiliation: Department of Clinical Chemistry, University Hospital Schleswig Holstein, Kiel, Lübeck, Germany. Electronic address: leagottl@uksh.de.
authors.forename: Ulrike
authors.initials: U
authors.lastname: Nowak-Göttl
authors.affiliation: Department of Clinical Chemistry, University Hospital Schleswig Holstein, Kiel, Lübeck, Germany.
authors.forename: Hartmut
authors.initials: H
authors.lastname: Clausnizer
authors.affiliation: Department of Clinical Chemistry, University Hospital Schleswig Holstein, Kiel, Lübeck, Germany.
authors.forename: Dorothee
authors.initials: D
authors.lastname: Kowalski
authors.affiliation: Department of Clinical Chemistry, University Hospital Schleswig Holstein, Kiel, Lübeck, Germany.
authors.forename: Verena
authors.initials: V
authors.lastname: Limperger
authors.affiliation: Univ. Childrens' Hospital, Department of Pediatric Oncology and Hematology, Münster, Germany.
authors.forename: Anne
authors.initials: A
authors.lastname: Krümpel
authors.affiliation: Department of Clinical Chemistry, University Hospital Schleswig Holstein, Kiel, Lübeck, Germany.
authors.forename: Maria
authors.initials: M
authors.lastname: Shneyder
authors.affiliation: Department of Clinical Chemistry, University Hospital Schleswig Holstein, Kiel, Lübeck, Germany.
authors.forename: Sarah
authors.initials: S
authors.lastname: Reinke
authors.affiliation: Department of Clinical Chemistry, University Hospital Schleswig Holstein, Kiel, Lübeck, Germany.
authors.forename: Angela
authors.initials: A
authors.lastname: Rocke
authors.affiliation: Center of Blood Transfusion, University Hospital Schleswig Holstein, Germany.
authors.forename: David
authors.initials: D
authors.lastname: Juhl
authors.affiliation: Center of Blood Transfusion, University Hospital Schleswig Holstein, Germany.
authors.forename: Dagmar
authors.initials: D
authors.lastname: Steppat
authors.affiliation: DKD HELIOS Klinik Wiesbaden GmbH, Wiesbaden, Germany.
authors.forename: Manuela
authors.initials: M
authors.lastname: Krause
mesh_terms: D000293:Adolescent; D000328:Adult; D000367:Age Factors; D000368:Aged; D001778:Blood Coagulation Disorders / Q000453:epidemiology* / Q000523:psychology; D002648:Child; D005190:Family; D005260:Female; D006470:Hemorrhage / Q000453:epidemiology* / Q000523:psychology; D006801:Humans; D008297:Male; D008875:Middle Aged; D011788:Quality of Life; D012737:Sex Factors; D011795:Surveys and Questionnaires; D020246:Venous Thrombosis / Q000453:epidemiology* / Q000523:psychology; D055815:Young Adult
keywords: Adults; Children; DVT; Hereditary-acquired bleeding disorder; Quality of life