imagem top

2019

ANUÁRIO DO HOSPITAL
DONA ESTEFÂNIA

CHULC LOGOlogo HDElogo anuario

HURDLES OF A NATIONAL SURVEILLANCE OF CEREBRAL PALSY. OVERVIEW OF THE FIRST EIGHT SURVEYED YEARS IN PORTUGAL (BIRTH-COHORTS 2001-2008)

Daniel Virella1, Teresa Folha2, Ana Cadete3, Maria da Graça Andrada4, Rosa Gouveia5, Joaquim Alvarelhão6, Eulália Calado7

1- Centro de Investigação, Centro Hospitalar de Lisboa Central, Lisboa
2- Centro de Reabilitação de Paralisia Cerebral Calouste Gulbenkian, Lisboa
3- Departamento de Medicina Física e Reabilitação, Hospital Dr. Fernando Fonseca, Amadora
4- Programa Nacional Vigilancia Paralisia Cerebral
5- Sociedade Portuguesa de Pediatria do Neurodesenvolvimento
6- Escola Superior de Saúde, Universidade de Aveiro
7- Serviço de Neurologia Pediátrica, Centro Hospitalar de Lisboa Central, Lisboa

28th Annual Meeting of the European Academy for Child Disability, 2016

Introduction. Active epidemiological surveillance of cerebral palsy (CP) in childhood potentially provides evidence for trends in prevalence, severity and inclusion and to support adequate care. An overview of the first 8 years of the Portuguese national surveillance program, focusing on difficulties and drawbacks, is presented.
Patients and Methods. The Portuguese Surveillance of Cerebral Palsy at 5 years of age is a national registry (cross-sectional study) that actively registers children at the target age 5-years-old with CP, using multiple sources and active recapture strategies (allowing indefinite register of missed cases). It shares definitions, classifications and tools with SCPE. MRI is classified by its predominant pattern. Registered children with CP born in 2001-2008, survivors at 5 years of age or deceased at an earlier age with definite diagnosis of CP, were included. 1172 cases were registered, 52 (4.4%) deceased cases. Official demographic data are used as population denominators. Prevalence rates of CP at age 5 are given for birth-cohorts (BC). Results. BC prevalence was 1.99‰ in 2006, 1.45-1.68‰ in 2007-10 and ≤0.7‰ onwards. Cases born in Portugal are 94%; 99% of survivors lived in Portugal. Sources are healthcare (81%), education (17%); the deaths register (1.7%); notifiers are physicians (94%) (physiatrists 65%, paediatric neurologists 18%, paediatricians 17%), therapists, nurses, teachers, social workers; multiple notifiers or sources contributed for 25.7% and 16.6% of the cases respectively. Clinical questionnaire is absent in 73 cases (6%). Missing values for CP classification 7%, birth variables 13-24%, GMFCS/BFMF 14-16%, cognition 20%, hearing impairment 23%, MRI classification 54%. No temporal trend was seen for cases reported with predominant spastic CP; 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 epidemiological surveillance of CP requires a great effort to reach adequate coverage, validity and representativeness. Multiple sources and recapture strategies are used for accurate description of this condition on a populational and regional basis. Support from private and state institutions is primal. Special care should be taken when analyzing data from periods with inadequate coverage or notification biases.

Palavras Chave: cerebral palsy, surveillance,