Standardized clinical data capture to describe cerebral palsy
Authors: Kim Susie , Steffen Kelsey , Gottschalk-Henneberry Lauren , Miros Jennifer , Leger Katie , Robichaux-Viehoever Amy , Taca Karen , Aravamuthan Bhooma 
Published: August 2024

Objective

To describe a standardized methodology for capturing clinically valuable information on young people with cerebral palsy (CP) from caregivers and clinicians during routine clinical care.

Methods

We developed a caregiver-facing intake form and clinician-facing standardized note template and integrated both into routine clinical care at a tertiary care CP center (https://bit.ly/CP-Intake-Methodology). We extracted this caregiver and clinician-entered data on people with an ICD10 diagnosis of CP seen between 3/22/23 and 12/28/23. We used this data to describe how CP manifests in this group and which medical features affected the odds of walking, oral feeding, and speech by age 5.

Results

Of 686 visits, 663 (97%) had caregiver- and clinician-entered data and 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%), walk independently (368/633, 58.1%), eat all food and drink safely by mouth (288/578, 55.9%), and produce understandable speech (249/584, 42.6%). Cortical grey matter injury and duration of initial critical care unit stay affected the odds of walking, oral feeding, and speech (binary logistic regression, p<0.001).

Conclusions

We comprehensively captured caregiver and clinician-entered data on 97% of people seen in a tertiary care CP Center and used this data to determine medical features affecting the odds of three functional outcomes. By sharing our methodology, we aim to facilitate replication of this dataset at other sites and grow our understanding of how CP manifests in the US.

Article summary

Using caregiver and clinician-entered data on people seen in a tertiary-care CP center, we determined medical features affecting the odds of three functional outcomes.

What’s known on this subject

Detailed CP characterization can be limited if using population-based registries and retrospective chart review alone, including limited data on recently validated functional classification systems for CP.

What this study adds

We comprehensively captured caregiver and clinician-entered data on 97% of people seen in our CP Center to describe how CP manifests and show that cortical injury and initial ICU stay duration affect the odds of walking, oral feeding, and speech.

Contributors Statement

Susie Kim helped design the study, aggregated data, carried out data analyses, and critically reviewed and revised the manuscript.

Kelsey Steffen helped conceptualize and design the study and critically reviewed and revised the manuscript.

Lauren Gottschalk, Jennifer Miros, Katie Leger, Amy Viehoever, and Karen Taca helped design the study and critically reviewed and revised the manuscript.

Bhooma Aravamuthan conceptualized and designed the study, supervised data collection and analysis, drafted the initial manuscript, and critically reviewed and revised the manuscript.