Measuring knowledge of patients with congenital heart disease and their parents: validity of the 'Leuven Knowledge Questionnaire for Congenital Heart Disease'.

Background: Patients with congenital heart disease (CHD) and their parents need to have sufficient knowledge on their condition, treatment, medication, and preventive measures. The Leuven Knowledge Questionnaire for Congenital Heart Disease (LKQCHD) was developed to comprehensively measure the level of knowledge in patients with CHD.

Aims: This study aimed to translate the LKQCHD into Chinese and to test its validity to be used in patients with CHD and their parents.

Method: Questionnaire translation was guided by a three-step linguistic validation method. Evidence based on test content and on relation with other variables was obtained. For test content, we included five experts in CHD and research methods. Furthermore, the instrument was tested in 89 pairs of adolescents with CHD and their parents.

Results: We found a high item-level content validity index (>0.78 in all except two items), high scale-level content validity index (>0.90), high free-marginal multirater Kappa (>0.75), and low average proportion of missing values (0.49% in adolescents; 0.51% in parents), showing an excellent content validity. The hypothesized positive correlations between parental knowledge and parental educational level and between patient's knowledge and patient's age, as well as the hypothesis that parents have more knowledge than their children, were confirmed. This provides validity evidence based on relation with other variables.

Conclusions: The Chinese version of the LKQCHD is valid to assess the level of knowledge in patients with CHD and their parents.