Assessing the Current Communication Practices and Physicians’ Perceptions of Newborn Screening in Arizona

Every year, hundreds of babies in Arizona are found to have a serious condition identified through newborn screening (NBS), and with current law requiring Arizona to include new conditions to be added to the recommended uniform screening panel (RUSP) within two years of addition to the RUSP, the number of identified babies can be expected to increase. It is essential that physicians are prepared to handle the results of NBS and discuss the implications, in a timely manner, with their patients in order to facilitate treatment. Purpose: To (1) evaluate the current practices and processes of communicating newborn screening results to parents; (2) assess the effectiveness and timeliness of the communication methods used for conveying NBS results; (3) identify potential barriers and challenges associated with the communication of NBS results. Methods: Approval for this study was obtained from the Arizona State University Institutional Review Board. A survey was generated through Qualtrics and Arizona physicians were contacted via email (n = 462). The email contained a link to the survey, or a scannable QR code was provided if the survey was to be accessed via handheld device. Results: Seventy physicians responded (15% response rate). More than half of the participants often discuss NBS with families prior to conducting the initial screen. 40% of physicians do not feel confident in explaining the purpose and significance of the two newborn screens required by Arizona law. 54% of respondents are not satisfied with the training and resources provided to support them in counseling patients on newborn screening results. 51% of respondents involve a geneticist, other specialist(s), or other experts in the management of an abnormal result. Of the roughly half that do not involve a geneticist or other specialist when an abnormal result requires follow-up, 50% of those physicians order further genetic testing in office. Conclusions: Most physicians agree that their greatest barrier to delivering abnormal screening results is using patient friendly language and would prefer language friendly ACT sheets to improve their communication of abnormal screening results. Incorporating personnel skilled in communicating uncertain news, such as a genetic counselor (GC), into Arizona's NBS program could enhance physician communication skills and improve patient satisfaction, while also providing psychosocial support and facilitating follow-up care for patients.