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Impact of Cardiologist's Demeanor and Terminology Following Congenital Heart Disease Diagnosis

This study examines the effect of pediatric cardiologist's counseling style and terminology on parental perceptions and decision-making after a diagnosis of congenital heart disease. Findings suggest that parents are more likely to seek second opinions when they feel pressured to terminate the pregnancy or receive pessimistic information about their child's prognosis. The study emphasizes the importance of compassionate and empathetic communication by physicians.

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Impact of Cardiologist's Demeanor and Terminology Following Congenital Heart Disease Diagnosis

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  1. Counseling Following the Diagnosis of Congenital Heart Disease: Impact of the Cardiologist’s Demeanor and Terminology Debra Hilton-Kamm, MBA,1 Mark Sklansky, MD,2 Ruey-Kang Chang, MD, MPH3 1 California Heart Connection, 2 David Geffen School of Medicine at UCLA, 3 Harbor-UCLA Medical Center 10737

  2. Financial Disclosures None

  3. Objective To evaluate parental perceptions and experiences when receiving the diagnosis of congenital heart disease (CHD).

  4. Hypotheses • 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 • Terminology used in counseling may be variably interpreted.

  5. Methods and Materials • An internet survey for parents of children with CHD was developed and 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.

  6. RESPONDENT CHARACTERISTICS

  7. Results – 2nd Opinions

  8. Results – Ratings of Pediatric Cardiologist (PC)

  9. Results – Terminology Note: No difference was found for education level of parents

  10. Conclusions • Parents were more likely to seek a 2nd opinion when they: • 1) felt pressured to terminate the pregnancy • 2) were not optimistic about their child’s life expectancy • 3) were told that their child’s death was likely • 4) were told the child’s CHD was “rare” • Parents’ perception of PC’s compassion and empathy was inversely related to the likelihood of seeking a 2nd opinion. Those seeking 2nd opinion generally chose the 2nd PC for long term follow up.

  11. Conclusions (continued) The majority of parents receiving the diagnosis of their child’s CHD are told that the condition is “rare.” This may negatively impact parents’ perceptions of their children’s prognoses and impact their decision-making. Physicians need to be aware that some terminology such as “rare” may be interpreted negatively by some parents, and that the parents’ perception of the physicians’ demeanor may be a factor in obtaining a 2nd opinion and choosing a different PC.

  12. Additional Information • Related study: Hilton-Kamm D, Chang RK, Sklansky M, Prenatal Diagnosis of Hypoplastic Left Heart Syndrome: Impact of Counseling Patterns on Parental Perceptions and Decisions Regarding Termination of Pregnancy. [Epub ahead of print May 23, 2012], PediatrCardiol., http://link.springer.com/article/10.1007/s00246-012-0366-9, Accessed Oct. 26, 2012 • Contact: Debra Hilton-Kamm, debhilton@aol.com California Heart Connection, Irvine, CA, USA

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