"There's no national guidance on how this information should be delivered back to families, which leaves it up to each state's newborn screening program to decide the best route that they see fit," Dr. Corinna Schultz explains.
According to data presented tonight at the American Society of Hematology (ASH) Annual Meeting and Exposition by Corinna Schultz, MD, Department of Pediatrics, Sidney Kimmel Medical College of Thomas Jefferson University, Center for Cancer and Blood Disorders, Nemours Children's Health, Primary Care Physicians (PCPs) recognized the importance of discussing the presence of sickle cell trait (SCT) with patient caregivers.
However, their overall confidence to speak about this varied and the likelihood that they would do so declined with the age of their patients. Schultz explained that this study followed up on a previous one done on the information that's gathered from newborn screening, a test done of every baby born in the US which includes detecting sickle cell disease (SCD), as well as sickle cell trait.
"We had done a study where we looked back at over 182,000 kids who were treated across 3 different states in our health system, to see how often they had sickle cell trait documented in our chart," Schultz said in an interview with HCPLive. "We saw that it wasn't documented nearly as often as we thought it should be, and so we wanted to answer the question of: why it wasn't being documented."
From there, Schultz and her team went straight to the source to get answers and evaluated the pediatricians in their healthcare system to ask them about practices regarding sickle cell trait screening results.
"There's no national guidance on how this information should be delivered back to families, which leaves it up to each state's newborn screening program to decide the best route that they see fit," she explained. "Some states give that information back to the primary care physicians and then it's their responsibility to hand it back to the families. Some don't report the information at all to anybody, while some report it directly back to families."
As a pediatric physician, Schultz expressed that disclosing information like this to the patients, the families is an ethical part of ensuring patient autonomy.
"If I have information about a patient's medical history, well, they should also be able to have that information," she said. "Not giving that information is depriving them of knowledge that I have about their medical situation."