To evaluate sociodemographic and medical predictors of patient return to a neurofibromatosis subspecialty clinic.

Data were collected from the Washington University Neurofibromatosis Clinical Program electronic medical records. A total of 713 subjects with initial visits to the Washington University Neurofibromatosis Clinical Program between July 1, 2005 and December 18, 2020 were included. Variables collected included sex, race, ethnicity, age, date of first visit, place of residence, diagnosis, insurance payer, physician recommendation for return, and subject return. Return rates for each demographic group were calculated. Bivariate analyses were performed to inform variable inclusion in the model, and a binary logistic regression model was calculated to predict subject return.

The overall return rate was 76%. The binary logistic regression model was statistically significant (χ²₉ = 131.094; P < .001) and showed that subjects who self-identified as Black and/or African American, presented with or received a diagnosis of café-au-lait macules at their initial visit, were from a rural area, were older, or who lived farther from the Washington University Neurofibromatosis Clinical Program were less likely to return to clinic.

These findings support the implementation of tailored communication and monitoring interventions to improve the care for children with neurofibromatosis type 1.