Standardized clinical data capture to describe cerebral palsy
Insights
A new standardized method captures valuable clinical data from caregivers and clinicians for young people with cerebral palsy (CP). This data reveals how CP manifests and identifies factors influencing walking, feeding, and speech outcomes.
Area of Science:
- Neurology
- Pediatrics
- Clinical Informatics
Background:
- Cerebral palsy (CP) characterization is often limited by traditional data collection methods like registries and chart reviews.
- Existing methods may not capture comprehensive data on functional classification systems crucial for CP management.
- There is a need for standardized methodologies to gather detailed clinical information in routine care settings.
Purpose of the Study:
- To establish a standardized methodology for collecting clinically relevant information on young individuals with CP.
- To integrate caregiver and clinician-entered data into routine clinical practice at a specialized CP center.
- To describe the manifestation of CP and identify predictors of functional outcomes in this population.
Main Methods:
- Development and implementation of a caregiver-facing intake form and a clinician-facing standardized note template.
- Integration of these tools into the workflow of a tertiary care CP center.
- Extraction and analysis of data from individuals diagnosed with CP between March 2023 and December 2023.
Main Results:
- High data capture rate (97%) from both caregivers and clinicians.
- Prevalence of quadriplegia (47.0%), spasticity with dystonia (40.7%), independent walking (58.1%), safe oral feeding (55.9%), and understandable speech (42.6%) noted.
- Cortical grey matter injury and initial intensive care unit stay duration significantly impacted the odds of walking, oral feeding, and speech (p<0.001).
Conclusions:
- A standardized methodology effectively captured comprehensive data on individuals with CP in a tertiary care setting.
- The collected data enabled the identification of medical features influencing key functional outcomes.
- Sharing this methodology aims to promote replication and enhance understanding of CP manifestations across different sites.
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.
