CHDSurveyAbstracts

Published Medical Journal Articles:

The articles and abstracts listed are based upon a nationwide survey of parents of children with congenital heart disease. For background information, and how these studies can help improve communication with physicians and parents, please see our background information page.

Hilton-Kamm D, Sklansky M, Chang RK. How Not to Tell Parents About Their Child's New Diagnosis of Congenital Heart Disease: An Internet Survey of 841 Parents. Pediatr Cardiol. 2014 Feb; 35(2); 239-252 PMID:23925415

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. Pediatr Cardiol. 2012 Dec;33(8):1402-10. doi: 10.1007/s00246-012-0366-9. Epub 2012 May 23. PMID: 22618584

How these studies came to be. Read about the CHD Survey background information and timeline

Note: p values less than .05 are considered "statistically significant." The lower the p value, the less likely that the results were from chance. A p value of .001 means that the probability that the results were from chance are 1 in 1000.

Abstracts:

Counseling following the diagnosis of congenital heart disease: impact of the cardiologist’s demeanor and terminology. Hilton-Kamm D, Sklansky M, Chang RK. Poster session presented at: American Heart Association Scientific Sessions 19, November 3-7, 2012, Los Angeles, CA

Perceptions of survival and life expectancy impacted by termination counseling for parents receiving a prenatal diagnosis of Hypoplastic Left Heart Syndrome. (Abstract F39) Factors associated with parents' perceptions when receiving their child’s diagnosis of hypoplastic left heart syndrome. (Abstract F40) Hilton-Kamm D, Sklansky M, Chang RK. World Journal for Pediatric and Congenital Heart Surgery. Vol. 2, No. 1. Abstracts from Cardiology 2011, 139-192. Poster presentation presented at: Cardiology 2011, Scottsdale, AZ.

Medical Newsletter Articles:

Invited Article: Hypoplastic left heart syndrome and the myths of informed consent. Hilton-Kamm, D. American Academy of Pediatrics Bioethics Newsletter. Fall 2012;14-17.

Improving communication and outcomes for children with complex congenital heart disease using parent information-seeking behavior. Hilton-Kamm, D. Congenital Cardiology Today. 2012;10(3):11-14.

Caring for a child with congenital heart disease; practical tools and resources. Hilton-Kamm, D. Congenital Cardiology Today. 2006;4(2):9-12.

Receiving a child’s diagnosis of complex CHD: parents’ perspectives and communication tools. Hilton-Kamm, D. Congenital Cardiology Today 2005;3(12):12-16.

Published Text Book Chapters:

Upcoming text book chapter:

Optimising Prenatal Support of the Mother and Family

May 2019, 4th Edition of Anderson’s Pediatric Cardiology; Editors: Gil Wernovsky & James S. Tweddell & Kumar Krishna & Kathleen A. Mussato & Andrew Redington. Chapter co-authors Angela McBrien, Lisa K Hornberger and Debbie Hilton-Kamm

This chapter provides important information for physicians and other medical personnel when providing care to mothers expecting a child with a congenital heart defect. It provides insight and practical advice on how practitioners can more effectively communicate with, and provide care for parents during this extremely stressful time. For more information, see the publisher website.

Published book chapter:

Communication Chaos: How Incomplete and Conflicting Information Prevents Improved Outcomes for Patients with Pediatric and Congenital Cardiac Disease (and What We Can Do About It.)

In 2014, Debbie was asked to co-author a book chapter outlining how parents get information on their child's heart condition and surgeries. In the U.S., data regarding pediatric heart surgeries is hard to come by, as there is no mandated outcomes reporting as there is for adult (acquired heart disease) surgeries.Co-authored with Helen Haskell, founder of Mothers Against Medical Error, this chapter outlines the difficulties parents have in finding objective, and accurate information regarding life-saving heart surgeries for their children.

Communication Chaos: How Incomplete and Conflicting Information Prevents Improved Outcomes for Patients with Pediatric and Congenital Cardiac Disease (and What We Can Do About It). Hilton-Kamm, D, and Haskell, H. (2015). In P.R. Barach, J.P. Jacobs, S.E. Lipshultz, P.C. Laussen (eds.) Pediatric and Congenital Cardiac Care: Volume 1: Outcomes Analysis. (pp. 491-505). London: Springer-Verlag, doi: 10.1007/978-1-4471-6587-3_37