Adults knowledge and perception of their congenital heart disease: a single center cross-sectional study

Abstract

Abstract Background A great proportion of patients with congenital heart disease (CHD) reach adulthood and face daily challenges living with a chronic illness. Healthcare management of these patients is complex requiring a multidisciplinary approach. To date, few studies have focused on adult patients’ understanding of their CHD. Aim To assess adults’ knowledge of their CHD on 4 domains: (1) disease and treatment, (2) preventive measures, (3) physical activity, (4) reproductive issues. Methods One single center cross-sectional study. Patients were opportunistically recruited to participate in the study at their CHD medical visit, between October 2022 and December 2022. The authors translated Leuven Knowledge Questionnaire for CHD to Portuguese language. Patients that were willing to participate filled the survey before entering the physician’s room. Demographic and clinical variable were gathered during patients’ interview and from clinical records. After run-in period, data were analyzed in SPSS ® for the descriptive analysis. Categorical values were reported as counts and percentages. Results From a total of 344 patients observed during recruitment period, 97 accepted to participate in the study. Demographic and clinical characteristics of the study population are described in Table 1 and 2. Mean age was 41 years, 60% were female, 34% have an education level above 12th grade and 74% are employed. The 3 most prevalent CHD were Tetralogy of Fallot (16%) and atrial septal defect type secundum (13%) and ventricular septal defect (10%). Approximately half of the patients knew the name of their CHD and 41% could describe or locate the lesion on the pictured diagram. 38% could identify at least two symptoms of clinical deterioration. Three-fourths of patients did not know what endocarditis is and only 14% could tell fever was the main symptom of the disease. The majority of patients did not know the risk factors for endocarditis. 73% of patients are aware that they should choose an occupation adequate to their physical status and 75% knew that they are allowed to engage in sexual intercourse if capable of doing so. Only 20% had adequate knowledge about the hereditary nature of their condition. 43% of women knew the risk of clinical deterioration during pregnancy. Conclusion This study showed our patients have high levels of education and employment. Still, large proportions of adults have lack of knowledge about important issues in vary domains. These findings reinforce the need to improve patients’ education about their disease. In addition, it highlights the importance of guideline recommendations on multidisciplinary teams to achieve high quality of care in adults with CHD.