Published online December 1, 2005
PEDIATRICS Vol. 116 No. 6 December 2005, pp. 1492-1498 (doi:10.1542/10.1542/peds.2004-2611)
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Content of Communication by Pediatric Residents After Newborn Genetic Screening

Michael H. Farrell, MD*, Alison La Pean, MS{ddagger} and Lynnea Ladouceur, MPH§

* Center for Patient Care and Outcomes Research, Medical College of Wisconsin, Milwaukee, Wisconsin
{ddagger} Neurogenetics Branch, National Institutes of Health/National Institute of Neurological Disorders and Stroke, Bethesda, Maryland
§ Division of AIDS, International Research Branch, National Institutes of Health/National Institute of Allergy and Infectious Diseases, Bethesda, Maryland

Background. Newborn screening saves lives, but psychosocial complications after genetic screening have led to doubts about expanding programs. Because complications have been blamed on ineffective communication of results, a population-scale system to ensure communication quality may improve outcomes. The objective of this study was to develop and evaluate a method to assess the content of communication after newborn genetic screening.

Methods. We abstracted content data and calculated quantitative scores for 3 communication quality indicators (key content, early placement of good news, and excessive background content) for 59 transcribed conversations between pediatric residents and simulated parents of an "infant" who was found via newborn screening to carry either cystic fibrosis or sickle cell hemoglobinopathy.

Results. Only 8.5% of transcripts contained the key content items that were thought to be necessary for parental understanding; 27.1% included reassuring news about carrier status within the first 10% of content. Scores for 3 quality indicators fell in the low performance range in 35.6%, 30.5%, and 27.1% of transcripts, respectively. The most common topic was background about the disease (22% of content statements) even though the infant did not have the disease. Surprisingly, 50% of sickle trait transcripts included counseling about a possible risk for sudden death.

Conclusions. Assessment of the content domain of communication quality identified some high-quality communication interspersed with many missed opportunities. If integrated into newborn screening, our method may help to alleviate some of society's ethical concerns about benefit and risk after newborn and other genetic screening.

Key Words: communication • genetic testing • newborn screening • patient-doctor communication • quality improvement

Abbreviations: SCH, sickle cell hemoglobinopathy • CF, cystic fibrosis • BSCA, Brief Standardized Communication Assessment • GPA, grade point average

Accepted Apr 8, 2005.


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