A big data approach to evaluate receipt of optimal care in childhood cerebral palsy

Alexis Mitelpunkt*, Megan A. Stodola, Jilda Vargus-Adams, Brad G. Kurowski, Kelly Greve, Surbhi Bhatnagar, Bruce Aronow, Janet Zahner, Amy F. Bailes

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

Abstract

Purpose: Through automated electronic health record (EHR) data extraction and analysis, this project systematically quantified actual care delivery for children with cerebral palsy (CP) and evaluated alignment with current evidence-based recommendations. Methods: Utilizing EHR data for over 8000 children with CP, we developed an approach to define and quantify receipt of optimal care, and pursued proof-of-concept with two children with unilateral CP, Gross Motor Function Classification System (GMFCS) Level II. Optimal care was codified as a cluster of four components including physical medicine and rehabilitation (PMR) care, spasticity management, physical therapy (PT), and occupational therapy (OT). A Receipt of Care Score (ROCS) quantified the degree of adherence to recommendations and was compared with the Pediatric Outcomes Data Collection Instrument (PODCI) and Pediatric Quality of Life Inventory (PEDS QL). Results: The two children (12 year old female, 13 year old male) had nearly identical PMR and spasticity component scores while PT and OT scores were more divergent. Functional outcomes were higher for the child who had higher adjusted ROCS. Conclusions: ROCSs demonstrate variation in real-world care delivered over time and differentiate between components of care. ROCSs reflect overall function and quality of life. The ROCS methods developed are novel, robust, and scalable and will be tested in a larger sample.IMPLICATIONS FOR REHABILITATION Optimal practice, with an emphasis on integrated multidisciplinary care, can be defined and quantified utilizing evidence-based recommendations. Receipt of optimal care for childhood cerebral palsy can be scored using existing electronic health record data. Big Data approaches can contribute to the understanding of current care and inform approaches for improved care.

Original languageEnglish
Pages (from-to)723-730
Number of pages8
JournalDisability and Rehabilitation
Volume46
Issue number4
DOIs
StatePublished - 2024

Funding

FundersFunder number
National Institutes of HealthR01 HD103654
Cincinnati Children’s Research Foundation

    Keywords

    • big data approach
    • care delivery
    • Childhood cerebral palsy
    • electronic health record
    • optimal care

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