P3.E095: Assessing the Current Communication Practices and Physician’s Perceptions of Newborn Screening in Arizona

Background: Every year, about 100 babies in Arizona are found to have a serious condition identified through newborn screening (NBS), with current law requiring Arizona to include new conditions added to the recommended uniform screening panel within two years, the number of identified babies can be expected to increase. It is essential that physicians are prepared to handle the results of newborn screening and discuss the implications in a timely manner in order to facilitate treatment.

Project Description: Project objectives included: 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. 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.

Discussion: Sixty-five physicians responded (14% response rate). 63% of physicians surveyed discuss newborn screening prior to conducting the test, 37% physicians do not feel confident in explaining the purpose and significance of either 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.

Conclusion: 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. Arizona’s newborn screening program would benefit from increasing physician knowledge and communication skills, as well as psychosocial benefits and follow-up care for the patient by the inclusion of a genetic counselor in screening protocols.