Benchmarking models of care delivery within Cerebral Palsy Research Network sites

To describe and benchmark the structure and service components of multidisciplinary cerebral palsy (CP) programs in North America.

This was a cross-sectional descriptive benchmarking study utilizing a convenience sample from North American member sites within the Cerebral Palsy Research Network. Structured presentations on care delivery with standardized extraction included: programmatic structure; clinical flow; data collection and program improvement; and service offerings. Site investigators confirmed accuracy of each center's extracted data. Free-text responses provided further context. Frequencies of the various aspects of service provision were calculated.

Eleven sites participated. Service delivery frequency was identified as foundational (present universally), core (present at 8-10 participating sites), or specialty (present at seven or fewer sites). Universal services included tone and orthotic management, access to therapies and equipment, orthopedic surveillance and surgery, neurosurgical procedures, and gait analysis. Specialty services included transition, adult, mental health, and reproductive care.

Based on representation in our cohort, we propose a checklist of foundational, core, and specialty features as benchmarks for individual CP programs. Although additional work is needed to assess widespread consensus, applicability, and utility, our findings provide a preliminary framework for standardizing service delivery for centers striving to provide comprehensive CP care.