1- Neonatal Intensive Care Unit Hospital D.Estefania Lisboa Portugal
2- Physical Medicine and Rehabilitation Service, Hospital Dr Fernando da Fonseca, Amadora, Portugal
3- Centro de Reabilitação Paralisia Cerebral Calouste Gulbenkian Lisboa Portugal
4- Programa Nacional Vigilancia Paralisia Cerebral
5- Pediatric Neurology Service Hospital Dona Estefania, Lisboa Portugal
6- Scientific and Investigation Department Federação das Associações de Paralisia Cerebral Porto, Portugal
7- Neurodevelopment Portuguese Society
20th European Congress of Physical and Rehabilitation Medicine, Estoril - Lisbon 23-28 April 2016 (comunicação oral)
European Journal of Physical and Rehabilitation Medicine. Vol. 52 – Suppl.1 to No.2 (resumo)
Background and aims: Active epidemiological surveillance of cerebral palsy (CP) provides evidence to evaluate trends of prevalence, severity and inclusion. A sustained, nation-wide surveillance program requires dynamic resources to maintain coverage and validity of the data.
Materials and Methods: The P. Surveillance of Cerebral Palsy at 5 years of age is a national registry that actively registers children at age 5-years-old with CP, using multiple sources. It shares definitions, classifications and tools with SCPE. Registered children with CP born in 2001-2008 were included. Official demographic data are used as population denominators.
Results: 1172 cases born in 2001-2008 were registered, 52 (4.4%) deceased cases. Birth-cohort (BC) prevalence of CP at age 5 was 1.99‰ in 2006, 1.45-1.68‰ in 2007-2010 and ≤0.7‰ afterwards. The rate of deceased cases was 1.8-6.4%, lower in 2006-2008 BC. Cases born in Portugal are 94% (89-96%) and 99% (96-100%) of the survivors lived in Portugal. Multiple notifiers and multiple sources contributed for 25.7% and 16.6% of the cases respectively. The most frequent source was healthcare (81%), followed by education (17%) and the deaths register (1.7%). Physicians are the most frequent notifiers (94%). The clinical questionnaire was absent in 73 cases (6%). Missing values ranged from 0% for gender to 72% for MACS: 7% for the classification of CP, 13-24% for birth variables, 14-16% for GMFCS and BFMF, 20% for cognition, 23% for hearing impairment, 54% for MRI classification.
Conclusions: Active epidemiological surveillance of CP requires a great effort to reach adequate coverage and representativeness. To have a more reliable registry we must support and encourage notifiers, multiple sources and recapture strategies have to be used to achieve an accurate description of this condition on a population and regional basis. Special care should be taken when analyzing data from periods with inadequate coverage or notification biases.
Palavras Chave: Cerebral Palsy, portuguese surveillance