Published online December 1, 2005
PEDIATRICS Vol. 116 No. 6 December 2005, pp. 1499-1505 (doi:10.1542/10.1542/peds.2005-0449)
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Initially Misleading Communication of Carrier Results After Newborn Genetic Screening

Alison La Pean, MS* and Michael H. Farrell, MD{ddagger}

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

Background. Newborn screening saves lives, but the way in which parents learn of a positive screening test is also important for adherence with treatment plans and avoidance of psychosocial complications. The first messages provided to parents may be particularly important for understanding, especially when the infant is found to be a heterozygous carrier for sickle cell hemoglobinopathy (SCH) or cystic fibrosis (CF). This study investigated the prevalence of "initially misleading" communication, defined as the inclusion of 1 of 55 "bad-news" content items (eg, the screening test is positive) before any of 39 "good-news" content items (eg, the infant is healthy, normal, a carrier, or otherwise without problems).

Methods. As part of a larger study of the content of counseling after newborn genetic screening, we used a quantitative, explicit-criteria method to abstract 59 transcribed conversations between pediatric residents and standardized parents of an "infant" who was found through newborn screening to carry either CF or SCH.

Results. Of 59 transcripts, 41 were found to be misleading (at least 1 bad-news content statement before the first good-news content statement). There were significantly more misleading likely-CF-carrier than SCH-carrier transcripts (89.7% vs 50%). Among the misleading transcripts, the mean number of misleading statements was 5.5. The mean distance between the first bad-news and first good-news statements was 28.1 statements (20.5% of the total duration of counseling).

Discussion. The high prevalence of misleading content and the time lag before clarification does not bode well for parental understanding of infant carrier status. Future projects should improve curricula for training programs and develop quality-assurance efforts for community clinicians both to improve parental understanding and help assuage society's fears about the safety of genetic screening technologies.

Key Words: cystic fibrosis • genetic testing • newborn screening • patient-doctor communication • sickle cell disease

Abbreviations: SCH, sickle cell hemoglobinopathy • CF, cystic fibrosis • SP, standardized parent

Accepted Apr 12, 2005.


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