Nele Zupancic

Effectiveness of structured patient education on the knowledge level of adolescents and adults with congenital heart disease

Background: Patients with congenital heart disease (CHD) have poor understanding of their heart condition, treatment and prevention of complications. To improve their level of health-related knowledge, a structured education program was implemented in the adult congenital heart disease program. This study aimed (a) to evaluate the level of knowledge of patients who received structured CHD education as compared to patients who did not receive this education; (b) to explore if the provision of structured education is an independent determinant of knowledge; and (c) to evaluate whether patients who received structured education reached the educational target (>80% correct answers). Methods and results: A total of 317 patients were included: 226 in the education group, and 91 in the comparison group. Knowledge was assessed using the ‘Leuven Knowledge Questionnaire for Congenital Heart Disease’. The mean total knowledge score in the education group (57%) was significantly higher as compared to the comparison group (43%) (p<0.001). However, only 24 patients (11%) in the education group reached the educational target of the program. After adjusting for patient’s age, educational level and disease complexity, hierarchical multivariable linear regression analysis showed that the provision of structured CHD education was an independent determinant of higher levels of knowledge. Conclusion: A structured education program was associated with a higher level of knowledge. However, the educational target for sufficient knowledge was reached in a very limited number of patients. Hence, continuous efforts in educating patients and developing alternative education methods are needed.

Health risk behaviors in adolescents and emerging adults with congenital heart disease: psychometric properties of the Health Behavior Scale-Congenital Heart Disease.

Background: To optimize long-term outcomes, patients with congenital heart disease (CHD) should adopt health-promoting behaviors. Studies on health behavior in afflicted patients are scarce and comparability of study results is limited. To enlarge the body of evidence, we have developed the Health Behavior Scale-Congenital Heart Disease (HBS-CHD). Aims: We examined the psychometric properties of the HBS-CHD by providing evidence for (a) the content validity; (b) validity based on the relationships with other variables; (c) reliability in terms of stability; and (d) responsiveness. Methods: Ten experts rated the relevance of the HBS-CHD items. The item content validity index (I-CVI) and the averaged scale content validity index (S-CVI/Ave); the modified multi-rater Kappa and proportion of missing values for each question were calculated. Relationships with other variables were evaluated using six hypotheses that were tested in 429 adolescents with CHD. Stability of the instrument was assessed using Heise’s method; and responsiveness was tested by calculating the Guyatt’s Responsiveness Index (GRI). Results: Overall, 86.3% of the items had a good to excellent content validity; the S-CVI/Ave (0.81) and multi-rater Kappa (0.78) were adequate. The average proportion of missing values was low (1.2%). Because five out of six hypotheses were confirmed, evidence for the validity of the HBS-CHD based on relationships with other variables was provided. The stability of the instrument could not be confirmed based on our data. The GRI showed good to excellent capacity of the HBS-CHD to detect clinical changes in the health behavior over time. Conclusion: We found that the HBS-CHD is a valid and responsive questionnaire to assess health behaviors in patients with CHD.