Social Determinants of Genetics Referral and Completion Rates Among Pediatric Neurology Patients

Area of Science:

• Medical Genetics
• Pediatric Neurology
• Health Disparities

Background:

• Investigating factors influencing genetics clinic referral and visit completion in pediatric neurology.
• Understanding clinical, social, and systems-level determinants is crucial for equitable care.

Purpose of the Study:

• To determine predictors of genetics clinic referral and visit completion among pediatric neurology patients.
• To compare referral and completion rates between Black and White pediatric neurology patients.

Main Methods:

• Utilized electronic health record (EHR) data from pediatric neurology clinics (July 2018-January 2020).
• Compared referral and completion rates using bivariable and logistic regression analyses.
• Focused on non-Hispanic Black and White patients, excluding other ethnoracial groups due to small sample sizes.

Main Results:

• In a cohort of 11,371 patients, 304 were referred, and 229 completed genetics visits.
• Referral rates did not differ by race but were associated with younger age, rurality, neurodevelopmental diagnosis, and provider type.
• White patients were twice as likely as Black patients to complete genetics visits (aOR=2.18; 95% CI 1.06-4.48), controlling for other factors.

Conclusions:

• No racial disparity in genetics clinic referral rates was observed.
• A significant disparity exists in genetics visit completion, with White patients more likely to complete visits.
• Further investigation into systemic racism, patient attitudes, or other factors is necessary to address this completion gap.