Wednesday, September 28, 2016

An Educational Needs Assessment for Primary Care Providers Regarding the Severe Combined Immunodeficiency (SCID) Newborn Screen

Evan Shereck
Oregon Health Sciences University

Severe Combined Immunodeficiency (SCID) was added to the Oregon Newborn Screening Program in May 2014. We surveyed pediatricians in Oregon to determine their level of knowledge and comfort in discussing the screen with their patient families. Of the 400 pediatricians in Oregon who were asked to participate, 80 (20%) responded. Approximately 76% of the pediatricians were in private practice and 24% were in academic practice. Only 53% of the pediatricians were aware of the screen in Oregon. Self-assessment of knowledge was low with 73% rating themselves as poor or fair. Likewise, the PCPs also rated their ability to counsel patients as low with 73% saying their ability was poor to fair. Pediatricians preferred to learn about SCID through online tutorials and requested scripts to use with families. In conclusion, pediatricians felt ill equipped to discuss the SCID newborn screen with families and more resources should be made available to educate and support these pediatricians.