Severe Combined Immunodeficiency: Knowledge and Information Needs Among Healthcare Providers.

ABSTRACT:

Background

Severe combined immunodeficiency (SCID) is a group of life-threatening genetic disorders responsible for severe dysfunctions of the immune system. Despite the expansion of newborn screening in the U.S., there are gaps in healthcare providers' knowledge of SCID.

Methods

We recruited 277 U.S. healthcare providers for an online survey. The survey assessed providers' experience with SCID patients, knowledge about SCID, and needs and preferred formats for SCID-related informational resources. We examined differences between providers who have seen 2 or more patients with SCID (SCID provider group) and those who have seen 0-1 SCID patients (non-SCID provider group).

Results

Overall, 210 (75.8%) providers were included in the non-SCID provider group, and 121 (57.6

SUBMITTER: Kutsa O 

PROVIDER: S-EPMC8899266 | biostudies-literature | 2022

REPOSITORIES: biostudies-literature