Lack of provision of social and emotional information about Down syndrome associated with negative prenatal diagnosis experiences.

Abstract

To determine how physician adherence to recommended practices for discussing Down syndrome (DS) impacts patient experiences, and which of these recommendations most correlate with positive prenatal patient experiences. Online surveys were distributed to mothers of children with DS born between 2016-2021. The descriptions of prenatal experiences were assigned sentiment analysis scores: positive, negative, or neutral. The scores were then compared against the adherence of clinicians to recommended practices for delivering prenatal screening results. Of the 167 patients in this study, over 50% described a negative experience. The odds of having a neutral/positive diagnosis experience were about 18 times greater for those patients whose physicians adhered to all seven social recommendations. The odds of having a positive/neutral screening experience were 11.4 times greater for those patients whose physicians adhered to both emotional recommendations (not saying "I'm sorry" or conveying the diagnosis as bad news"). Most of the variance in the patient diagnosis experience was attributed to adherence to emotional recommendations and social recommendations. To meet the needs of patients, obstetricians need to address emotional, social, and informational needs by providing 1) access to balanced and accurate information about disabilities and 2) being better trained on sensitive communications.