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 ―

Abstract

Background: 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. Methods and Results: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 2 =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 (r=0.213 [P=0.109] and r=0.405 [P=0.002], respectively). Conclusions:We confirmed the validity of the Japanese version of the LKQCHD, concluding that patient education regarding longterm complications, prevention methods, heredity, pregnancy, and childbirth is needed.

The association between the social adaptive skills of school-aged children with congenital heart disease and mothers' decision factors for providing disease explanations in Japan: a cross-sectional study

“…However, children with CHD often do not have a good understanding of the disease. Patients demonstrated a poor level of knowledge on all five thematic subscales (knowledge about CHD diagnosis, cardiovascular risk factors, symptoms of deterioration, endocarditis, and reproductive issues) [ 4 ], and other studies have consistently reported additional inadequacies [ 5 - 7 ]. Furthermore, young patients relied more on the information provided by their parents than on the information provided by their doctors [ 8 ], and the people who explained the disease for the first and subsequent times were reported to be "parents," "doctors," and "parents and doctors" in that order [ 9 ].…”