Objective and Personalized Assessment of Disease-Related Knowledge Among Patients With Congenital Heart Disease - Development and Validation of the Japanese Version of the Leuven Knowledge Questionnaire for Congenital Heart Disease.

Disease understanding in patients with congenital heart disease is important in transitional and lifelong care. This study aimed to develop the Japanese version of the Leuven Knowledge Questionnaire for Congenital Heart Disease (LKQCHD) and identify factors associated with disease-related knowledge. After confirming the content and face validity of the scale, a questionnaire including the LKQCHD was distributed to 59 eligible patients aged >16 years attending a university hospital. For the 58 participants who responded (30 males, 28 females; median age 22 years), the mean (±SD) LKQCHD total score was 53.7±15.4, with mean (±SD) scores for each domain as follows: Disease and Treatment, 68.3±19.7; Preventing Complications, 45.8±19.0; Physical Activity, 74.1±34.1; Sex and Heredity, 37.9±35.4; and Contraception and Pregnancy, 40.2±29.1. Regarding known-groups validity, we found a positive correlation between the LKQCHD score and age (ρ=0.268, P=0.042), and a significantly low LKQCHD score in the moderate/severe disease group (η=0.131, P=0.021). Regarding convergent validity, the LKQCHD score was positively correlated with the total and subscale scores of the Resilience Assessment Tool (=0.213 [P=0.109] and =0.405 [P=0.002], respectively). We confirmed the validity of the Japanese version of the LKQCHD, concluding that patient education regarding long-term complications, prevention methods, heredity, pregnancy, and childbirth is needed.