ABC | Volume 114, Nº5, May 2020

Original Article Lima Campos et al. Knowledge about the congenital heart disease Arq Bras Cardiol. 2020; 114(5):786-792 Methods This is a cross-sectional study that included children and adolescents with CHD, aged between 8 and 13 years, followed at the Pediatric Outpatient Clinic of Instituto de Cardiologia do Rio Grande do Sul, carried out from February 2017 to February 2018. The study protocol was approved by the Research Ethics Committee of Fundação Universitária, and all participants and parents/guardians signed the Free and Informed Consent (FIC) form and Term of Assent (TA). Patients were included consecutively for one year, from the list of medical appointments scheduled during the study period. Patients with Down Syndrome, Noonan Syndrome, Charge Syndrome, autism, arrhythmias and syndromes that compromise the understanding of their disease were excluded. The age range of the participants was checked on the outpatient clinic agenda. After inclusion by age, the respective medical records were analyzed to confirm the presence of CHD (Figure 1). The children’s interviews were carried out in the waiting room of the outpatient clinic, where the objectives and study protocol were explained to the patients and their parents/ guardians. Data collection was carried out by the same interviewer (EFLC), who was informally dressed, and lasted between 6 and 20 minutes. A semi-structured questionnaire was developed, based on the Leuven Knowledge Questionnaire for Congenital Heart Disease (LKQCHD) 6 about knowledge of CHD. Sociodemographic and clinical data, such as previous hospitalizations, hemodynamic and surgical procedures, were extracted from the patient’s medical record. Information on the age at which the diagnosis of CHD was obtained was obtained directly from the parents or guardians, so that the CHDs were classified as minimal lesions (ML), acyanotic without implications (ASI), acyanotic with implications (AWI) and cyanotic (CY). 11 The children and adolescents were asked to explain, in their own words, what they understood about their disease. The content analysis of the explanatory responses of children and adolescents regarding the knowledge of their disease was carried out by two physicians specialized in pediatric cardiology (M.A. and L.C.P.) and, subsequently, the level of knowledge was classified into 4 groups: Correct (C), Partially Correct (P/C), Incorrect (IN) and Doesn’t Know (DK). To assess the level of physical activity, the Typical Physical Activity and Food Intake Day (DAFA) instrument was partially used. We used the part of physical activity that illustrates 11 types of physical activities in three different intensities. The overall level of physical activity was determined by adding the scores of the activities that the assessed individuals reported performing on most days of the week. Three different weights were assigned aiming to weigh the activities indicated by the patients: weight one for light intensity activities, weight three for moderate intensity activities and weight nine for vigorous intensity activities. The score can reach up to 143 points, indicating children who are less active, intermediate or more active. 12,13 Based on quartiles limits [median of 25.0 (1 st - 3 rd quartile: 16.0 - 36.0)], the DAFA scores were classified into three categories: extremely low DAFA, scores ≤ 16.0, intermediate scores, around the median 16.0<DAFA≤ 36.0 and extremely high scores, DAFA>36.0. The sample calculation was performed using the WinPepi® program version 11.1914. The proportion of 50% of children with some type of knowledge about their diseasewas considered, with a statistical power of 90%and 5%margin of error. Therefore, the sample was estimated at 325 patients. During the study development, after the inclusion of 335 patients, it was verified that the scheduled patients had already been evaluated and there were no new inclusions in the outpatient clinic. Checking the agenda of the pediatric outpatient clinic and selecting patients by age (n=485) Checking the diagnosis of CHD in the medical file (n=387) Consent for inclusion in the study protocol (n=335) Filled out the knowledge questionnaire (n=335) Filled out the DAFA questionnaire (n=334) Exclusion: Did not respond the DAFA questionnaire (n=1) Exclusion (n=52) Down syndrome (n = 33) Charge Syndrome (n = 1) Noonan syndrome (n = 1) Autism (n = 5) Other syndromes (n = 3) They did not accept to participate (n = 9) No file (n=98) Figure 1– Flowchart. CHD: congenital heart disease; DAFA: Typical Physical Activity and Food Intake Day. 787