Critical issues in craniofacial care: quality of life, costs of care, and implications of prenatal diagnosis.

Since the 2000 Surgeon General's Report on Oral Health (SGROH), substantial areas of inquiry relative to individuals, especially children and youth, with orofacial clefts and other craniofacial conditions have emerged. These areas include access to and cost of care, stigmatization and quality of life, and social and ethical issues around prenatal diagnosis. This update on the 2000 SGROH examines what we have learned about the cost and ability to access cleft and craniofacial care, prenatal diagnosis, and how quality of life is impacted by these conditions and the burden of care. The development of new research tools to assess quality of life since 2000 will permit further study of the impact of oral and craniofacial conditions on children and families and the effect of treatment on quality of life. Despite a better understanding of the higher use of services and increased costs of care for families of children with craniofacial conditions, major gaps in research must be addressed to assist with program planning and policy development for these groups of children and their families. Further work is also needed to assess the cost-effectiveness of craniofacial team care and to better understand family experience with accessing needed care. Finally, prenatal detection and diagnosis of clefts and craniofacial conditions have advanced dramatically, and the roles of craniofacial professionals and teams have been affected. New understandings of prenatal diagnosis and genomic sciences are redefining genetic counseling, therapy, and future preventive initiatives.