Characteristics of Cerebral Palsy in the Midwestern US.

Objective: Cerebral palsy (CP) is the most common lifelong motor disability worldwide. Yet, data is limited on how CP manifests in the US. Our objective was to characterize and determine factors affecting functional outcomes in a large population of young people with CP in the Midwestern US.

Methods: We integrated caregiver and clinician-facing standardized data entry into routine clinical care at a tertiary care CP center (https://bit.ly/CP-Intake-Methodology). We extracted this data for people with an ICD10 diagnosis of CP seen between March 22, 2023 and December 28, 2023 and used it to describe CP characteristics and determine factors affecting the odds of walking, oral feeding, and speech by Age 5.

Results: Of 686 unique individuals with an ICD10 diagnosis of CP, 663 (97%) had caregiver- and clinician-entered data, of whom 633 had a clinician-confirmed CP diagnosis (mean age 9.1, 53.4% Male, 78.5% White). It was common to have quadriplegia (288/613, 47.0%), both spasticity and dystonia (257/632, 40.7%), pain (230/629, 36.6%), poor sleep (190/629, 30.0%), anxiety (157/633, 24.8%), walk independently (368/633, 58.1%), eat food and drink safely by mouth (288/578, 55.9%), produce understandable speech (249/584, 42.6%), and/or require anti-seizure medications (268/633, 42.3%). Cortical gray matter injury, initial critical care stay duration, and CP etiology affected the odds of walking, oral feeding, and speech (binary logistic regression, p < 0.001).

Interpretation: Noting that most population data on CP is from outside of the US, analysis of this detailed American dataset may help better inform prognostication and clinical screening for co-existing conditions in people with CP in the US.