ABC | Volume 114, Nº5, May 2020

Original Article Knowledge about the Disease and the Practice of Physical Activity in Children and Adolescents with Congenital Heart Disease Elisandra Furlan de Lima Campos, 1 Lisiane Perin, 1 Melina Assmann, 1 Fernanda Lucchese, 1 Lucia Campos Pellanda 1, 2 Programa de Pós-Graduação em Ciências da Saúde: Cardiologia. Instituto de Cardiologia do Rio Grande do Sul – Fundação Universitária de Cardiologia, 1 Porto Alegre, RS – Brazil Departamento de Saúde Coletiva – Universidade Federal de Ciências da Saúde de Porto Alegre, 2 Porto Alegre, RS – Brazil Mailing Address: Elisandra Furlan de Lima Campos • Instituto de Cardiologia do Rio Grande do Sul / Fundação Universitária de Cardiologia - Avenida Princesa Isabel, 370 / 3º andar. Postal Code 90620-000, Porto Alegre, RS - Brazil E-mail: elysfurlan013@gmail.com Manuscript received December 13, 2018, revised manuscript May 24, 2019, accepted July 17, 2019 DOI: https://doi.org/10.36660/abc.20180417 Abstract Background: Knowledge about the disease itself can be important for self-care in patients with several problems and comprehends information about the diagnosis up to the most important clinical implications. Objective: To identify the level of knowledge of children and adolescents with congenital heart disease (CHD) about their illness, and to analyze the association between the level of knowledge and the practice of physical activity. Methods: Cross-sectional study with 335 patients with CHD, aged 8 to 13 years, followed at a referral pediatric cardiology service in Southern Brazil. Patients were interviewed regarding their knowledge about CHD and a review of medical records was performed to obtain details on heart disease and procedures. A significance level p<0.05 was used. Results: More than 50% of the children and adolescents did not know how to say the name of their disease or explain it. After adjusted OR (AOR), cyanotic patients in comparison to acyanotic ones (AOR: 2.29; 95%CI: 1.76-6.71; p = 0.019); children with lower level of schooling (AOR: 2.20; 95%CI: 1.81-5.86; p = 0.025); and those who did not practice physical activity (AOR: 1.88; 95%CI: 1.09-3.45; p = 0.011) showed potential for incorrect answers or did not know their disease. Conclusion: Cyanotic children and adolescents, with a lower level of schooling and who did not practice physical activity, had little knowledge about their disease. It is necessary to develop educational intervention strategies to increase knowledge and change behavior in physical activity promotion, according to the CHD complexity. (Arq Bras Cardiol. 2020; 114(5):786-792) Keywords: Heart Defects, Congenital/physiopathology; Cyanosis; Child, Adolescents; Health Information Systems; Physical Activity. Introduction Knowledge of the disease itself is an important factor for self-care in patients with congenital heart disease (CHD) 1 and ranges from information about the diagnosis to the most important clinical implications. 2 CHD is responsible for 0.8–1.2% of all congenital defects and has a prevalence of approximately 5.8 per 1,000 individuals. 3 The incidence of CHD in Brazil is estimated at around 26,000 new cases per year. 4 To minimize the risk of complications and improve health status, patients are expected to adopt certain health behaviors, such as physical activity, healthy eating and oral hygiene practices. 5 However, the complexity of heart diseases and the recurring concept of the need for physical restriction generate doubts among parents and health professionals about the adequate levels of physical activity for children and adolescents with CHD. 6 Moreover, the guidelines change over time, after the heart disease repair. 7 Therefore, often the family or the patients themselves restrict physical activities without this representing medical advice. Few studies have been performed on the specific knowledge of diseases such as CHD in children, adolescents or adults. Therefore, there are information gaps in different age groups and most studies have a small number of patients that allows the extrapolation of results. 5,8-11 Therefore, identifying the levels of the knowledge of a child with CHD about their disease can allow better planning of health education programs that will contribute to minimize doubts regarding the practice of physical activity (PA) and improve adherence to treatment. Thus, the aim of this study was to identify the level of knowledge of children and adolescents with CHD about their disease, and to analyze the association between the level of knowledge and the practice of physical activity. 786