Objective: Growth in the adults with congenital heart disease (ACHD) population represents a challenge to the health care infrastructure. As patients with chronic disease are increasingly held accountable for their own care, contributors to disease-specific health knowledge, which are known to correlate with patients' participation in care, merit investigation to design patient-focused interventions. Design: We conducted a single-site, cross-sectional study of ACHD patients. Investigators retrospectively gathered clinical data as well as psychometric and health status assessments completed at the time of enrollment. Outcome Measures: We investigated the impact of clinical and psychological variables on Leuven Knowledge Questionnaire for Congenital Heart Diseases health knowledge composite scores (HKCS). Variables with significant associations were considered in a stepwise multivariable regression model to determine which combination of variables jointly explained variability in HKCS. Results: Overall HKCS was associated with the number of prior cardiac surgeries (r = 0.273; 95% CI: 0.050-0.467; P =.016), perceived stress (r = 0.260; 95% CI: 0.033-0.458; P =.024), SF-36 emotional well-being (r = −0.251; 95% CI: −0.451, −0.024; P =.030), history of noncardiac surgery (P =.037), cirrhosis (P =.048), and presence of implantable cardioverter-defibrillator (P =.028). On multivariable modeling, only the number of cardiac surgeries was found to correlate with HKCS. Conclusions: While univariate correlations were found between HCKS and several other clinical and psychological variables, only number of prior cardiac surgeries independently correlated with disease-specific health knowledge in ACHD patients. These results suggest that clinical and psychological variables are not impediments to disease-specific health knowledge.
- adult congenital heart disease
- disease-specific health knowledge
- psychology in adult congenital heart disease