Hemoglobinopathy newborn screening knowledge of physicians

Abstract

Background: Hawai'i has a diverse population, including many individuals of Asian descent. A relatively high proportion of Hawai'i infants are born with inherited hemoglobinopathies; about 2% have α-thalassemia trait. The Hawai'i Genetics Program engages in genetics services and public health activities, including a hemoglobinopathy clinic and provider education.

Purpose: This study was undertaken to assess baseline pediatrician hemoglobinopathy knowledge that would then inform the development of education programs.

Methods: In 2008-2009, a brief survey assessed Hawai'i pediatrician hemoglobinopathy and newborn screening (NBS) knowledge. To place results in context, pediatricians in San Francisco (SF) and Salt Lake City (SLC) (similar and different patient demographics, respectively) were surveyed; 660 surveys were mailed to pediatricians from the NBS Program database (Hawai'i) or telephone listings (SF and SLC). Results were analyzed in 2011. Total and individual knowledge scores were calculated based on four questions.

Results: Overall, 226 (34%) pediatricians responded: 113 from Hawai'i, 54 from SF, and 59 from SLC (45%, 23%, and 34% response rates, respectively). Overall, 89.4% of participants had either good or perfect knowledge scores: 16% of participants had attended a hemoglobinopathy educational session in the past 6 months; 32.4% give iron to all anemic patients; 29% reported that β-thalassemia is not detected by NBS, and 8% were unsure. Results identified significant knowledge differences regarding sickle cell disease and whether or not a complete blood count diagnoses α-thalassemia.

Conclusions: Knowledge gaps between and within the pediatrician populations present opportunities for education regarding hemoglobinopathies and NBS panels. The results will inform the development of hemoglobinopathy education materials to assure a knowledgeable healthcare workforce in the growing area of genetics and newborn screening.