title: Direct non-medical and indirect costs for families with children with congenital cardiac defects in Germany: a survey from a university centre.
abstract: BACKGROUND
  Parents of children with congenital cardiac disease suffer from psychological stress and financial burdens. These costs have not yet been quantified.
  
  
  METHODS
  In cooperation with paediatricians, social workers, and parents, a questionnaire was devised to calculate direct non-medical and indirect costs. Direct non-medical costs include all costs not directly related to medical services such as transportation. Indirect costs include lost productivity measured in lost income from wages. Parents were retrospectively queried on costs and refunds incurred during the child's first and sixth year of life. The questionnaire was sent out to 198 families with children born between 1980 and 2000. Costs were adjusted for inflation to the year 2006. Children were stratified into five groups according to the severity of their current health status.
  
  
  RESULTS
  Fifty-four families responded and could be included into the analysis (27.7%). Depending on severity, total direct non-medical and indirect costs in the first year of life ranged between an average of euro1654 in children with no or mild (remaining) cardiac defects and an average euro2881 in children with clinically significant (residual/remaining) findings. Mean expenses in the sixth year of life were as low as euro562 (no or mild (remaining) cardiac defects) and as high as euro5213 (potentially life-threatening findings). At both points in time, the highest costs were lost income and transportation; and day care/ babysitting for siblings was third.
  
  
  CONCLUSIONS
  Families of children with congenital cardiac disease and major sequelae face direct non-medical and indirect costs adding up to euro3000 per year on average. We should consider compensating families from low socioeconomic backgrounds to minimise under-use of non-medical services of assistance for their children.
authors.affiliation: Institute for Health Economics and Clinical Epidemiology, University of Cologne, Gleueler Strasse, Cologne, Germany. andreas.gerber@uk-koeln.de
authors.forename: Andreas U
authors.initials: AU
authors.lastname: Gerber
authors.forename: Agnieszka Hompanera
authors.initials: AH
authors.lastname: Torre
authors.forename: Guido
authors.initials: G
authors.lastname: Büscher
authors.forename: Stephanie A K
authors.initials: SA
authors.lastname: Stock
authors.forename: Christine
authors.initials: C
authors.lastname: Graf
authors.forename: Sabine
authors.initials: S
authors.lastname: Schickendantz
authors.forename: Konrad
authors.initials: K
authors.lastname: Brockmeier
authors.forename: Markus
authors.initials: M
authors.lastname: Lüngen
mesh_terms: D000293:Adolescent; D002648:Child; D017281:Cost of Illness; D005190:Family; D005260:Female; D005858:Germany; D019538:Health Care Surveys; D006330:Heart Defects, Congenital / Q000191:economics*; D006801:Humans; D007182:Income; D008297:Male; D012189:Retrospective Studies; D014186:Transportation