1 - Programa de Vigilância Nacional de Paralisia Cerebral aos 5 Anos de Idade em Portugal (PVNPC5A);
2 - Unidade de Cuidados Intensivos Neonatais do Hospital Dona Estefânia, Área de Pediatria Médica, Centro Hospitalar de Lisboa Central;
3 - Sociedade Portuguesa de Neonatologia da Sociedade Portuguesa de Pediatria;
4 - Federação das Associações Portuguesas de Paralisia Cerebral.
- Conferência
- Instituto de Saúde Pública da Universidade do Porto (ISPUP) Open Seminars. Porto, 2 de Março de 2018
Resumo: National surveillance of health conditions are potent instruments to obtain valuable information that contribute for the knowledge of epidemiology of the condition, its clinical presentation and evolution, rational organization of resources (health, education, social services) and advocacy from patient and family associations. The case-study of the implementation of the Programa de Vigilância Nacional da Paralisia Cerebral aos 5 Anos in Portugal is used to discuss crucial issues as: justification for the surveillance and aims; stockholders, alliances and partnerships; definitions, classifications, tools for assessment, instruments and methods; coverage, reliability and validity; population denominators, indicators; sustainability; dissemination, usefulness of information. In spite of the specificities of paediatric conditions, the requirements for a useful and successful national surveillance of health conditions are mostly common to other contexts.
Palavras Chave: epidemiologia; vigilância; paralisia cerebral; PVNPC5A; Portugal.