Objective. We sought to document the prevalence of Internet access and usage patterns among families who have children with congenital heart disease presenting for cardiac surgery.
Design. A cross-sectional study was performed utilizing a questionnaire (10 questions) as the study tool. Statistical analysis was performed on all completed questionnaires. The χ2 test was used to evaluate categorical variables and the t test to evaluate continuous variables.
Results. Two hundred seventy-five questionnaires were completed and analyzed. Thirty-seven percent (102/275) of the children had a cyanotic congenital heart defect. There were 21 children with Trisomy 21. Fifty-eight percent (160/275) of families had access to the Internet. The most common locations for accessing the Internet were home (80%; 129/160) and work (51%; 82/160). There were no significant differences in Internet access with regards to underlying individual congenital heart defect, cyanotic versus acyanotic heart defects, or congenital heart defects with functional univentricular hearts versus biventriuclar hearts. Families with older children (12–24 years) were more likely to have Internet access. Families of children undergoing placement of a right ventricle to pulmonary artery conduit were more likely to have Internet access.
Of the 160 families with Internet access, 58% (93/160) used the Internet to obtain information related to their child’s cardiac diagnosis. Eighty-two percent (76/93) characterized locating cardiology-related information as easy. Six parents created interactive personal Web sites specifically related to their child’s congenital heart defect. Although families with older patients (12–24 years) were more likely to have access to the Internet, this did not translate into greater use of the Internet to obtain cardiology-related information. Among families who accessed the Internet for cardiology-related information, 95% (88/93) of families characterized the information as helpful or very helpful in furthering the understanding of their child’s heart defect.
Conclusion. Families are utilizing the Internet to educate themselves about congenital heart disease. Most parents consider the process easy and the information obtained helpful to the understanding of their child’s congenital heart defect and surgery. Internet use in this patient population is expected to increase. Our vigilance in providing accurate Internet references, as well as in identifying inaccurate Internet information available to our patients and their parents, is of paramount importance.