Screening Initially Misleading Communication of Carrier Results After Newborn Genetic

ABSTRACT. Background. Newborn screening saveslives, but the way in which parents learn of a positivescreening test is also important for adherence with treat-ment plans and avoidance of psychosocial complications.The first messages provided to parents may be particu-larly important for understanding, especially when theinfant is found to be a heterozygous carrier for sickle cellhemoglobinopathy (SCH) or cystic fibrosis (CF). Thisstudy investigated the prevalence of “initially mislead-ing” communication, defined as the inclusion of 1 of 55“bad-news” content items (eg, the screening test is posi-tive) before any of 39 “good-news” content items (eg, theinfant is healthy, normal, a carrier, or otherwise withoutproblems). Methods. As part of a larger study of the content ofcounseling after newborn genetic screening, we used aquantitative, explicit-criteria method to abstract 59 tran-scribed conversations between pediatric residents andstandardized parents of an “infant” who was foundthrough newborn screening to carry either CF or SCH.