title: Improving estimates of caregiver time cost and family impact associated with birth defects.
abstract: BACKGROUND
  Birth defects impose substantial costs on both families and society because of medical, developmental, and special education needs. Caring for children with birth defects also may influence caregiver time and impact the family. However, the economic cost of caregiver time and other impacts on the family has received far less attention than traditional healthcare costs.
  
  
  METHODS
  This study reviews the literature on measuring caregiver time costs and family impact in an economic framework. The economic framework involves translating caregiver time or difficulties into appropriate units such as cost or quality adjusted life years (QALYs).
  
  
  RESULTS
  Despite the potential important contribution of caregiver time costs to the total cost estimate of birth defects, few studies estimate caregiver time costs related specifically to birth defects. Only two studies provide estimates of these costs. Recent work has investigated the impact of chronic illness on caregivers in QALY terms, but birth defects have not been studied. Several issues need to be addressed in both the estimation of caregiver time costs and family impact to improve cost estimates.
  
  
  CONCLUSIONS
  Improved estimates of caregiver time costs and impact on the family will assist policy makers in allocating resources for the prevention and treatment of birth defects. Future research should investigate the economic costs of caregiver time and family impact associated with caring for children with birth defects.
authors.affiliation: Arkansas Center for Birth Defects Research and Prevention, Little Rock, Arkansas 72212, USA.
authors.forename: J M
authors.initials: JM
authors.lastname: Tilford
authors.forename: J M
authors.initials: JM
authors.lastname: Robbins
authors.forename: C A
authors.initials: CA
authors.lastname: Hobbs
mesh_terms: D017028:Caregivers / Q000523:psychology*; D000013:Congenital Abnormalities / Q000453:epidemiology* / Q000523:psychology*; D017281:Cost of Illness; D005192:Family Health; D006801:Humans; D015233:Models, Statistical; D010290:Parents; D019057:Quality-Adjusted Life Years; D012944:Social Support; D013997:Time Factors