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Ana Cadete, Daniel Virella, Teresa Folha, Maria-da-Graça Andrada, Rosa Gouveia, Joaquim Alvarelhão, Eulália Calado*

* on behalf of the National Surveillance of Cerebral Palsy in Portugal among 5-year-old Children, Federação das Associações Portuguesas de Paralisia Cerebral (FAPPC) and Surveillance of Cerebral Palsy in Europe (SCPE)

69th Annual Meeting of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM). Austin, EUA. 2015. Poster.

Background/Objectives. Active epidemiological surveillance of cerebral palsy (CP) in childhood potentially provides evidence to evaluate trends of prevalence, severity and inclusion and to support adequate care. An updated overview of the first decade of the Portuguese national surveillance program is presented. Study Design. The Portuguese Surveillance of Cerebral Palsy at 5 years of age is a national registry (cross-sectional study). Study Participants & Setting. Out of 1191 registered children with CP, 1105 survivors at 5 years of age (635 boys, 57.5%), born in 2001-2008 and living in Portugal in 2006-2013, were included. Materials/Methods. The Portuguese Surveillance actively registers children with CP at the target age 5-years-old, using multiple sources. It shares definitions, classifications and tools with SCPE. MRI is classified by its predominant pattern. Results. The birth-cohort prevalence of CP at age 5 was 1.94‰ in 2006, levelled at 1.41-1.66‰ in 2007-2010 and afterwards is provisionally less than 1‰. 93.6% had been born in Portugal, males were 57.5% overall (50.0-67.7), 54.6% were born at term (41.0-59.1). A post-neonatal cause was identified in 8.1%. MRI was performed in 76.2% and was amenable to be classified in 46.5%: early third trimester patterns (white matter lesions) were present in 41.1%, late third trimester patterns (grey matter lesions) in 27.4%, brain malformation in 13.4%. MRI was considered normal in 8.2%. CP was spastic in 83.9% (79.4-87.7), bilateral in 66.4% (59.8-75.3). GMFCS grades IV-V was described in 41.9% (33.8-52.2) and BFMF grades IV-V in 39.5% (30.3-52.2); impaired cognition was described in 58.1% (52.0-72.5); children were described as non-effective emitters on communication in 38.2% (30.3-50.6). Gastrostomy was registered in 5.2%. Seizures at the first 72 hours of life were registered in 24.6% and active epilepsy was present in 44.1%. Non-inclusive early education was registered in 19.2% (10.2-24.0). Among those children reported from 2011 onwards, for which adequate coverage is still lacking, more severe cases and those born preterm predominate. Conclusions/Significance. Active epidemiological surveillance of CP is a powerful tool to describe this condition on a population and regional basis. Maintaining large scale surveillance requires a great effort to reach adequate coverage and representativeness. Special care should be taken when data from periods with inadequate coverage are analysed.

Palavras Chave: epidemiological surveillance, cerebral palsy, children, coverage, reliability.