Improving estimates of caregiver time cost and family impact associated with birth defects

Background: Birth defects impose substantial costs on both families and soc iety because of medical, developmental, and special education needs. Caring for children with birth defects also may influence caregiver time and impa ct the family. However, the economic cost of caregiver time and other impac ts on the family has received far less attention than traditional healthcar e costs. Methods: This study reviews the literature on measuring caregiver time cost s and family impact in an economic framework. The economic framework involv es translating caregiver time or difficulties into appropriate units such a s cost or quality adjusted life years (QALYs). Results: Despite the potential important contribution of caregiver time cos ts to the total cost estimate of birth defects, few studies estimate caregi ver time costs related specifically to birth defects. Only two studies prov ide estimates of these costs. Recent work has investigated the impact of ch ronic illness on caregivers in QALY terms, but birth defects have not been studied. Several issues need to be addressed in both the estimation of care giver time costs and family impact to improve cost estimates. Conclusions: Improved estimates of caregiver time costs and impact on the f amily will assist policy makers in allocating resources for the prevention and treatment of birth defects. Future research should investigate the econ omic costs of caregiver time and family impact associated with caring for c hildren with birth defects. Teratology 64:S37-S41, 2001. (C) 2001 Wiley-Lis s, Inc.