title: Psycho-social determinants of quality of life in children and adolescents with haemophilia-a cross-cultural approach.
abstract: Quality of life (QoL) of children with chronic conditions has received increasing attention in recent years. While frequent paediatric health conditions and life-threatening conditions are in the foreground, QoL of children with rare diseases such as haemophilia is scarce. While haemophilia-specific instruments to assess QoL in children have been developed, cross-cultural comparison of QoL and its determinants has not been addressed so far. QoL and potential psychosocial determinants such as coping were assessed in 298 paediatric haemophilia patients from six European countries demonstrating significant differences in QoL between countries. Results indicated that psychosocial predictors varied across countries, although life satisfaction and social support explained the highest proportion of variance and, moreover, superseded clinical characteristics. These findings suggest that intervention programmes should be geared towards enhancing psychosocial resources in children and adolescents with haemophilia.
authors.affiliation: Institute and Policlinics of Medical Psychology, University Medical Centre Hamburg-Eppendorf (UKE). bullinger@uke.uni-hamburg.de
authors.forename: Monika
authors.initials: M
authors.lastname: Bullinger
authors.forename: Sylvia
authors.initials: S
authors.lastname: von Mackensen
mesh_terms: D000293:Adolescent; D002648:Child; D003431:Cross-Cultural Comparison; D005060:Europe; D005260:Female; D006305:Health Status Indicators; D006306:Health Surveys; D006467:Hemophilia A / Q000523:psychology*; D002836:Hemophilia B / Q000523:psychology*; D006470:Hemorrhage / Q000523:psychology; D006801:Humans; D008297:Male; D011594:Psychometrics; D011788:Quality of Life / Q000523:psychology*; D012803:Sick Role; D011795:Surveys and Questionnaires