Objective: To describe health care provided outside the Brazilian Reference Network for Craniofacial Treatment, and to inform the debate about craniofacial health care policy in Brazil.
Design: Observational, retrospective cohort.
Methods: Craniofacial care providers completed the same questionnaire previously used to evaluate the Brazilian Reference Network for Craniofacial Treatment (RRTDCF).
Results: Units outside the RRTDCF are mainly located in the southeast region of Brazil and in universities. They comprise 56 independent clinics, 22 combined clinics, and four parental associations. Services provided are variable from unit to unit and just six of them meet the American Cleft Palate-Craniofacial Association minimum team standard. Genetic evaluation and counseling is provided by clinical geneticists in 35 units; whereas, in 30 units, it is undertaken by untrained professionals.
Conclusion: A significant number of craniofacial units work in parallel and overlap the RRTDCF. They are funded by the government but not recognized as craniofacial teams. Regional disparities and lack of coordination within and between cleft lip and/or cleft palate (CL/P) teams are unsolved problems. Non-RRTDCF units are heterogeneous concerning configuration, service provided, areas of treatment, and composition of the teams. A nationwide and voluntary database on orofacial clefts is a proposed strategy to address some of these problems. Anticipated benefits include strengthening the collaboration within and between healthcare teams and supplying health authorities with a comprehensive and population-specific source of information on this prevalent and potentially preventable group of birth defects.