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

Background: To investigate clinical, social, and systems-level determinants predictive of genetics clinic referral and completion of genetics clinic visits among pediatric neurology patients. Methods: Electronic health record (EHR) data were extracted from pediatric patients (0-18 years) evaluated in pediatric neurology clinics at a single tertiary care institution between July 2018 and January 2020. Referral and referral completion rates to genetics clinics were compared among non-Hispanic single- or multiracial Black (Black) versus non-Hispanic White (White) patients using bivariablee analysis. Other ethnoracial identities were excluded due to small numbers. Variables associated with genetics clinic referral and visit completion were identified using logistic regressions. Results: In a cohort of 11,371 pediatric neurology patients, 304 were referred to genetics clinic and 229 (75.3%) completed genetics clinic visits. In multivariable analyses of Black and White patients (n = 10,601), genetics clinic referral rates did not differ by ethnoracial identity but were associated with younger age, rurality, neurodevelopmental disorder diagnosis, number of neurology clinic visits, and provider type. Genetics clinic visit completion rates were associated with number of neurology clinic visits and ethnoracial identity, with White patients twice as likely as Black patients to complete the visit (adjusted odds ratio=2.18; 95% confidence interval 1.06-4.48). Conclusions: Although no disparity in genetics clinic referral rates was identified, White patients were twice as likely as Black patients to complete a genetics clinic visit after referral. Further work is needed to determine whether this is due to systemic/structural racism, differences in attitudes toward genetics, or other factors.