Atenção a pessoas com anomalias craniofaciais no Brasil : avaliação e propostas para o Sistema Unico de Saude / Craniofacial care in Brazil : evaluation and suggestions to improve quality through the Unified Health System

AUTOR(ES)
DATA DE PUBLICAÇÃO

2008

RESUMO

Health care for persons with craniofacial anomalies (CFA) officially started in Brazil in the nineties. It was consolidated through the Reference Network for Craniofacial Treatment (RRTDCF). The RRTDCF was evaluated by Monlleo in 2004 when several non-RRTDCF units operating in the Unified Health System (SUS) were identified. Aims: (1) to evaluate health care provided through non-RRTDCF units; (2) to inform the debate about craniofacial health care policy in Brazil; (3) to build up a record on CFA units; (4) to build up a Brazilian database on orofacial clefts. Results: 82 non-RRTDCF units took part of the survey. They are mainly located in the southeast, and in universities. They are funded by the government and comprise independent clinics, multiprofessional teams and parental associations. Only 6 multiprofessional units meet the international criteria for minimal CFA teams. Clinical geneticists are involved in genetic counselling in 35 units, however in 30 it is provided by untrained professionals. Sixty two units agreed to participate in the national record proposed. The Brazilian database on orofacial clefts was designed to record clinical and familial information on patients assisted through the RRTDCF. Additionally, five satellite projects were built: (1) biobank of DNA; (2) general care assessment; (3) database of healthcare professionals and assessment of treatment protocols; (4) follow-up studies on surgical treatment and morbidity/mortality and (5) patient/parent satisfaction studies. Conclusion: non-RRTDCF units overlap RRTDCF regarding distribution, treatment provided, type of CFA treated, and funding. The current system does not ensure equity and coordination of care, and keeps up regional disparities. It is believed that these problems may be overcome through changes in the current national health policy for CFA in Brazil and suggestions are given in this regard. The national record on CFA units is a tool in the public interest and can improve equity of access to services. The database, on the other hand, is an achievable strategy to set up appraisal and audit systems and to support the reformulation of health policy for persons with CFA in the SUS

ASSUNTO(S)

fenda labial cleft lip abnormalities human cleft palate anomalias humanas fenda palatina

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