Morbidity and mortality in adults with congenital heart defects in the third and fourth life decade.

OBJECTIVES: The population of adults with congenital heart defects (ACHD) is continuously growing. Data on morbidity and mortality of ACHD are limited. This longitudinal observational study examined a group of ACHD with surgically corrected or palliated congenital heart defects (CHD) during a 15-year period. METHODS: ACHD that had participated in the initial study were invited for a follow-up examination. Mortality and hospitalization data were compared with a healthy control group. RESULTS: From 05/2017 to 04/2019 a total of 249/364 (68%) ACHD participated in the follow-up study: 21% had mild, 60% moderate and 19% severe CHD. During the observational period, 290 health incidents occurred (cardiac catheterization 37%, cardiovascular surgery 27%, electrophysiological study/ablation 20%, catheter interventional treatment 14%, non-cardiac surgery 3%). Events were more frequent in ACHD with moderate (53%) and severe (87%) compared to those with mild CHD (p < 0.001). 24 individuals died at a median age of 43 years during the observation period. 29% of them had moderate and 71% severe CHD corresponding to a mortality rate of 0%, 0.29% and 1.68% per patient-year in ACHD with mild, moderate and severe CHD. Long-term survival was significantly reduced in patients with severe CHD in comparison to individuals with mild and moderate CHD (p < 0.001). CONCLUSION: After correction or palliation of CHD, there was remarkable ongoing morbidity and mortality in ACHD patients over the 15-year observation period, particularly in individuals with moderate and severe CHD when compared with the general population. Thus, life-long special care is required for all surgically corrected or palliated ACHD patients.

A importância da brinquedoteca hospitalar e da terapia ocupacional sob a óptica da equipe de enfermagem de um hospital público do Distrito Federal / The importance of hospital playroom and occupational therapy from the perspective of the nursing team of a public hospital in the Federal District

The care provided to hospitalized children under the comprehensive perspective should not be limited simply to drug interventions and rehabilitation techniques. Children must be considered in their own singularities and they should have all known resources available to express themselves, and overcome hospitalization and the illness experience. In this sense, the playing duringthe period of illness and hospitalization represents a preferred means to keep contact with the world around them. Objective: To ascertain the views of the nursing team about the importance of a playroom in the hospital and the role of the occupational therapist in this context. Methods: A questionnaire was applied to the professional nursing staff of the pediatric unit of the third largest hospital in the Federal District. Results: Results demonstrated that the professional nursing team considers the playroom important and recognizes the occupational therapist's value, but they are not aware of the occupational therapist's role and the influence of the playing in the nursing routine. Conclusion: It is extremely necessary that playful activities increasingly gain ground in hospital settings through all subjects involved in the health-disease process in which children are inserted.

O cuidado à criança hospitalizada sob a perspectiva de atenção integral não deve ser limitado às intervenções medicamentosas ou simplesmente às técnicas de reabilitação. A criança necessita ser considerada em sua singularidade e ter à sua disposição recursos que sejam de seu domínio para expressar-se, vivenciar e superar a experiência do adoecimento e da hospitalização. Nesse sentido, o brincar durante o período de adoecimento e internação hospitalar representa um meio privilegiado de ela entrar em contato com o mundo à sua volta. Objetivo: Verificar a opinião da equipe de enfermagem sobre a importância de uma brinquedoteca hospitalar e o modo como percebem o terapeuta ocupacional nesse contexto. Método: Aplicação de um questionário a profissionais da equipe de enfermagem da unidade de pediatria do terceiro maior hospital do Distrito Federal. Resultados: Percebeu-se a importância atribuída à brinquedoteca por parte da equipe de enfermagem, o reconhecimento do valor do terapeuta ocupacional e o desconhecimento acerca do seu papel e da influência do brincar na rotina da enfermagem. Conclusão: É extremamente necessário que o lúdico, cada vez mais, ganhe espaço no âmbito hospitalar, para todos os sujeitos envolvidos no processo saúde doença em que a criança está.