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Characteristics of Cerebral Palsy in the Midwestern US
Susie Kim1, Kelsey Steffen1, Lauren Gottschalk-Henneberry1
1Division of Pediatric Neurology, Department of Neurology, Washington University School of Medicine, St. Louis, Missouri, USA.
Insights
This study characterizes cerebral palsy (CP) in the US, finding that brain injury and care duration impact walking, feeding, and speech outcomes. This data aids in better prognostication and screening for co-occurring conditions in individuals with CP.
Area of Science:
- Neurology
- Pediatrics
- Public Health
Background:
- Cerebral palsy (CP) is the most prevalent lifelong motor disability globally, yet comprehensive data on its manifestation within the United States is limited.
- Understanding the specific characteristics and outcomes of CP in the US is crucial for improving patient care and resource allocation.
Purpose of the Study:
- To characterize cerebral palsy (CP) in a large population of young individuals in the Midwestern US.
- To identify factors influencing functional outcomes, specifically walking, oral feeding, and speech, by age five.
Main Methods:
- Integrated standardized data collection into routine clinical care at a tertiary CP center.
- Extracted and analyzed data from individuals with an ICD-10 diagnosis of CP seen between March 2023 and December 2023.
Main Results:
- Analysis included 633 individuals with confirmed CP diagnoses (mean age 9.1, 53.4% male, 78.5% White).
- Common conditions included quadriplegia (47.0%), spasticity and dystonia (40.7%), pain (36.6%), poor sleep (30.0%), and anxiety (24.8%).
- Independent walking was achieved by 58.1%, safe oral feeding by 55.9%, and understandable speech by 42.6% by age five. Cortical gray matter injury, initial critical care duration, and CP etiology significantly affected these outcomes (p < 0.001).
Conclusions:
- This detailed dataset from the US provides valuable insights into CP characteristics and functional outcomes.
- Findings can enhance prognostication and clinical screening for co-existing conditions in the US population with CP.
- The study highlights the importance of integrated data collection for understanding CP in diverse populations.
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.
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