Apert syndrome is a congenital disorder with variable phenotypic expression, which carries considerable economic consequences for patients and their families. Timely diagnosis leading to medical and surgical intervention can mitigate the downstream sequelae of the disorder. However, there is a paucity of information regarding direct costs of healthcare and indirect costs associated with loss of productivity for affected individuals. This chapter systematically reviews the available literature on the economic impact of syndromic craniosynostosis treatment and generates a roadmap toward meaningful economic analysis. We review frameworks such as cost-effectiveness and cost–benefit analysis and their respective analytic tools, such as disability-adjusted and quality-adjusted life years. We focus on craniosynostosis to identify known and unknown data variables pertinent to treating craniosynostosis, including analogous disability weights from the global burden of disease. This chapter then highlights global perspectives on costs and financing strategies from a sample of centers worldwide actively delivering high-quality craniofacial services. In the future, clinical and policy decisions for the patient with Apert syndrome will be enhanced by improved econometrics data at national and international levels.

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Economic Considerations for the Treatment of Syndromic Craniosynostosis

  • Greta Davis,
  • Solomon Lee,
  • Ting-Chen Lu,
  • Cassio Eduardo Raposo-Amaral,
  • John G. Meara,
  • John Rose

摘要

Apert syndrome is a congenital disorder with variable phenotypic expression, which carries considerable economic consequences for patients and their families. Timely diagnosis leading to medical and surgical intervention can mitigate the downstream sequelae of the disorder. However, there is a paucity of information regarding direct costs of healthcare and indirect costs associated with loss of productivity for affected individuals. This chapter systematically reviews the available literature on the economic impact of syndromic craniosynostosis treatment and generates a roadmap toward meaningful economic analysis. We review frameworks such as cost-effectiveness and cost–benefit analysis and their respective analytic tools, such as disability-adjusted and quality-adjusted life years. We focus on craniosynostosis to identify known and unknown data variables pertinent to treating craniosynostosis, including analogous disability weights from the global burden of disease. This chapter then highlights global perspectives on costs and financing strategies from a sample of centers worldwide actively delivering high-quality craniofacial services. In the future, clinical and policy decisions for the patient with Apert syndrome will be enhanced by improved econometrics data at national and international levels.