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.
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.
Authors: Michael H Farrell; Stephanie A Christopher; Audrey Tluczek; Karen Kennedy-Parker; Alison La Pean; Kerry Eskra; Jenelle Collins; Gary Hoffman; Julie Panepinto; Philip M Farrell Journal: WMJ Date: 2011-10
Authors: Stephanie A Christopher; Nadia Y Ahmad; Lisa Bradford; Jenelle L Collins; Kerry Eskra; Alison la Pean Kirschner; Faith O O'Tool; Sara J Roedl; Michael H Farrell Journal: Commun Med Date: 2012