Abstract 10737: Counseling Following the Diagnosis of Congenital Heart Disease: Impact of the Cardiologist's Demeanor and Terminology
Background/Objective: An online survey for parents of children with congenital heart disease (CHD) was developed to study parental perceptions and experiences when receiving the diagnosis.
Method: The survey was distributed to online support groups. A total of 841 responses (N=841) from parents of children with CHD in the United States were received over a 4-week period in 2010. We hypothesized that the counseling and demeanor of the pediatric cardiologist (PC) may be an important factor in determining if parents of children with CHD seek 2nd opinions, and that the terminology used in counseling may be variably interpreted.
Results: Twenty-six percent (26%) of parents reported seeking a 2nd opinion from a second PC. The majority (71%) of those seeking 2nd opinions chose a different PC for long-term follow up. Those receiving a prenatal diagnosis were more likely to seek a 2nd opinion than those diagnosed postnatally (32% vs. 22%, p<0.01). Parents’ perception of the PC's compassion and empathy was inversely related to the likelihood of seeking a 2nd opinion. Parents were more likely to seek a 2nd opinion when they were not optimistic about their child's life expectancy, felt pressured by the PC to terminate the pregnancy, were told that their child's death was “somewhat” or “very” likely, or were told the child's CHD was “rare” (all p<0.01). Two-thirds (66%) of respondents were told their child's condition was “rare”; the majority (77%) reported the term was used by the PC. “Rare” was interpreted as “occurring in less than a million births” by 25%, and as “few or no other people alive with this defect” by 27%. No difference was found for education level. Those receiving the diagnosis of hypoplastic left heart syndrome (HLHS) were more likely to be told the condition was “rare” (88% vs. 58%, p<.01), and were more likely to interpret “rare” to mean “there was little or no chance of survival” (23% vs. 14%, p <.01).
Conclusion: Parents were more likely to seek a second opinion if they were less optimistic about their child's prognosis, felt pressured to terminate, rated the PC lower in compassion/empathy, or were told the condition was “rare”. The majority seeking 2nd opinions chose the new PC. The term “rare” may negatively impact parents’ perceptions of their children's prognoses.
- © 2012 by American Heart Association, Inc.