title: Health-related quality of life and impact of haemangiomas on children and their parents.
abstract: BACKGROUND
  Haemangiomas are the most common tumours of infancy, they are often present on the face and can lead to disfigurement. The aim of our study was to assess the health-related quality of life (HRQoL) of children aged 1-15 years with a haemangioma and their parents in comparison with healthy children, and to assess the impact on their life. Furthermore, we investigated if visibility and a complicated course of the haemangioma had influence on these outcomes.
  
  
  METHODS
  Age-specific validated HRQoL and haemangioma-specific questionnaires were sent to all children seen at the AMC in Amsterdam at the plastic surgery or dermatology departments.
  
  
  RESULTS
  Two hundred and one parents of children with a haemangioma returned the questionnaire (85%). The majority of parents and patients with a haemangioma are not negatively affected by it. Concerning HRQoL, parents of children aged 8 to 11 years reported their children to have more negative emotions. Children aged 12 to 15 reported a better HRQoL for physical symptoms, and positive emotions. No differences were found in the HRQoL questionnaires between visibility and complicated course. Significant differences occur in the specific haemangioma questionnaire. High scores on feelings of disbelief and panic during the growing phase are given by parents and patients agree with the statement on whether their life would be different without a haemangioma, especially when the haemangioma was visible and/or had a complicated course.
  
  
  CONCLUSIONS
  This is the first study to describe the HRQoL of children with haemangiomas. The psychosocial consequences of a haemangioma are feared by physicians and parents. The most important finding of this study is that the majority of children of all ages and their parents feel children with haemangiomas can live a good life. There is reason, however, to believe that having a haemangioma, especially one with a complicated course or a visible location, could result in psychosocial problems later in life, mostly related to physical appearance.
authors.affiliation: Department of Plastic, Reconstructive and Hand Surgery, Academic Medical Center, University of Amsterdam, The Netherlands. M.J.Hoornweg@amc.uva.nl
authors.forename: Marije J
authors.initials: MJ
authors.lastname: Hoornweg
authors.forename: Martha A
authors.initials: MA
authors.lastname: Grootenhuis
authors.forename: Chantal M A M
authors.initials: CM
authors.lastname: van der Horst
mesh_terms: D000293:Adolescent; D002648:Child; D006391:Hemangioma / Q000523:psychology*; D006801:Humans; D010290:Parents / Q000523:psychology*; D011788:Quality of Life / Q000523:psychology*; D013315:Stress, Psychological; D011795:Surveys and Questionnaires