Parental Preferences Regarding Outpatient Management of Children with Congenital Heart Disease.

Abstract

The objective of this study was to identify patterns of health care usage among children with congenital heart disease (CHD) and determine predictors for contacting cardiologists for routine care. Parents of children with CHD completed surveys, indicating which provider they would contact first for 12 concerns. Predictors for preference for cardiologist evaluation were identified by multivariable logistic regression. Surveys were completed by 307 of 925 (33.2%) parents. Median patient age was 9.4 years [interquartile range (IQR) 5.1-14.4 years] with a median of 1 cardiac surgery (IQR 1-3). Most parents agreed primary care physicians (PCPs) could identify problems related to CHD (70.0%) and when to refer to cardiologists (89.6%). More felt PCPs best understood their values (63.2 vs. 29.6%, P < 0.001) and were more accessible (63.5 vs. 33.6%, P < 0.001) than cardiologists. Parents preferred first evaluation by PCPs for 9 of 12 concerns. Preference for cardiology evaluation was independently associated with the number of cardiac catheterizations [adjusted odds ratio (AOR) for ≥2 catheterizations 2.4, 95% confidence interval (CI) 1.1-4.9], belief the cardiologist better knew the child's medical history (AOR 2.4, 95% CI 1.3-4.6), and provider accessibility (AOR 3.6, 95% CI 1.8-7.4). Parents of CHD patients reported close alignment with PCPs and would contact PCPs first for most routine care. However, some populations continue to contact cardiologists for routine care. Further study is needed to clarify best practices for clinician and parent education.