*on behalf of Programa de Vigilância Nacional de Paralisia Cerebral aos 5 Anos de Idade em Portugal (PVNPC5A), Federação das Associações Portuguesas de Paralisia Cerebral (FAPPC) and Surveillance of Cerebral Palsy in Europe (SCPE)
1-Research Center, CHLC;
2-Centro de Reabilitação de Paralisia Cerebral Calouste Gulbenkian;
3-Physical Therapy and Rehabilitation Dept., Hospital Dr Fernando Fonseca;
5-Portuguese Society of Neurodevelopment Paediatrics;
6-Escola Superior de Saúde, University of Aveiro;
7-Paediatric Neurology Dept., CHLC
- 1st Congress of Joint European Neonatal Societies and 56th ESPR/ESN Annual Meeting. Budapest, 20 de Abril de 2015 (poster)
- 69th Annual Meeting of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM). Austin (EUA), 21-24 Outubro de 2015 (poster)
- VI Jornadas Internacionais de Neonatologia / XLIV Jornadas Nacionais de Neonatologia. 5-6 Novembro 2015, Évora (comunicação oral)
Background. Active epidemiological surveillance of cerebral palsy (CP) provides evidence for trends in prevalence, severity and inclusion and to support adequate care.
Aim. An overview of difficulties and drawbacks of the first 8 years of the Portuguese Surveillance of Cerebral Palsy at 5 years of age (PVNPC5A) is presented.
Methods. PVNPC5A is a national registry; it actively registers 5-years-old children with CP, using multiple sources and active recapture strategies (allowing indefinite register of missed cases). It shares definitions, classifications and tools with SCPE. Children born in 2001-2008, both 5-years-old survivors and deceased at an earlier age were included. Official demographic data are used as denominators. Prevalence rates of CP at age 5 are given for birth-cohorts (BC).
Results. 1172 cases were registered (52 deceased). BC prevalence was 1.99‰ in 2006, 1.45-1.68‰ in 2007-10 and ≤0.7‰ onwards. Cases born in Portugal are 94%. Sources are healthcare (81%), education (17%) and deaths register (1.7%); notifiers are physicians (94%) (physiatrists 65%, paediatric neurologists 18%, paediatricians 17%), therapists, nurses, teachers, social workers; multiple notifiers (25.7%) or sources (16.6%) coexisted. The clinical questionnaire is absent in 73 cases (6%). Missing values for CP classification are 7%, birth variables 13-24%, GMFCS/BFMF 14-16%, cognition 20%, hearing impairment 23%, MRI classification 54%. No temporal trend was seen for predominant spastic CP cases; cases reported with GMFCS grades IV-V are 36-43% in 2001-4 BC and 45-53% in 2005-8 BC. Cases born at term are 54-60% in 2001-6 BC; in 2007-8 BC 54-59% are born preterm.
Conclusions. A sustained, active surveillance of CP requires multiple sources and recapture strategies for adequate coverage, validity and representativeness on a population and region basis. Private and state support is primal. Special care should be taken when analyzing data with inadequate coverage or notification biases.