Recommendations for starting a grown up congenital heart disease (GUCH) unit / Recomendações para a implantação de uma Unidade de Cardiopatias Congênitas no Adulto

AbstractDuring the last decades, advances in diagnosis and treatment of congenital heart disease have allowed many individuals to reach adulthood. Due mainly to the great diagnostic diversity and to the co-morbidities usually present in this age group, these patients demand assistance in a multidisciplinary facility if an adequate attention is aimed. In this paper we reviewed, based in the international literature and also on the authors’ experience, the structural conditions that should be available for these patients. We highlighted aspects like the facility characteristics, the criteria usually adopted for patient transfer from the paediatric setting, the composition of the medical and para- medical staff taking into account the specific problems, and also the model of outpatient and in-hospital assistance. We also emphasized the importance of patient data storage, the fundamental necessity of institutional support and also the compromise to offer professional training. The crucial relevance of clinical research is also approached, particularly the development of multicenter studies as an appropriate methodology for this heterogeneous patient population.

ResumoDurante as últimas décadas, os avanços verificados no diagnóstico e tratamento das cardiopatias congênitas têm permitido que muitos indivíduos cheguem à idade adulta. Devido principalmente à grande diversidade diagnóstica e também às comorbidades habitualmente presentes nesse grupo etário, esses pacientes necessitam ser atendidos numa unidade multidisciplinar, se o objetivo for proporcionar uma assistência adequada. Neste trabalho revisamos, com base na experiência dos autores e na literatura internacional, as condições estruturais que devem estar disponíveis para esses pacientes. Procuramos ressaltar aspectos como as características da unidade, o critério usualmente adotado para transferência desses pacientes da unidade pediátrica, a composição das equipes médica e paramédica levando em consideração os problemas específicos dos pacientes e também o modelo de assistência ambulatorial e hospitalar. Enfatizamos, ainda, a importância do armazenamento dos dados dos pacientes, a necessidade fundamental de apoio institucional e a importância de oferecer treinamento profissional. A relevância da pesquisa clínica é também abordada, particularmente a importância da confecção de estudos multicêntricos, como uma metodologia apropriada para essa heterogênea população de pacientes.

Assessing the scientific research productivity of a Brazilian healthcare institution: a case study at the heart institute of São Paulo, Brazil

INTRODUCTION: The present study was motivated by the need to systematically assess the research productivity of the Heart Institute (InCor), Medical School of the University of São Paulo, Brazil.OBJECTIVE: To explore methodology for the assessment of institutional scientific research productivity. MATERIALS AND METHODS: Bibliometric indicators based on searches for author affiliation of original scientific articles or reviews published in journals indexed in the databases Web of Science, MEDLINE, EMBASE, LILACS and SciELO from January 2000 to December 2003 were used in this study. The retrieved records were analyzed according to the index parameters of the journals and modes of access. The number of citations was used to calculate the institutional impact factor. RESULTS: Out of 1253 records retrieved from the five databases, 604 original articles and reviews were analyzed; of these, 246 (41%) articles were published in national journals and 221 (90%) of those were in journals with free online access through SciELO or their own websites. Of the 358 articles published in international journals, 333 (93%) had controlled online access and 223 (67%) were available through the Capes Portal of Journals. The average impact of each article for InCor was 2.224 in the period studied. CONCLUSION: A simple and practical methodology to evaluate the scientific production of health research institutions includes searches in the LILACS database for national journals and in MEDLINE and the Web of Science for international journals. The institutional impact factor of articles indexed in the Web of Science may serve as a measure by which to assess and review the scientific productivity of a research institution.