The Cerebral Palsy (CP) Research Network congratulates Amy F. Bailes, PhD, PT, Garey H. Noritz, MD, Duncan O. Wyeth, Elizabeth J. Lucas, MD, Elisabeth B. Bates, MD, Hana Azizi, MD, Cristina A. Sarmiento, MD, Deborah E. Thorpe, PT, PhD, Stephen A. Nichols, MD, Jodi Kreschmer, MA, Stephen Wisniewski, PhD, and Mary Gannotti, PhD for the publication of the 24th CP Research Network manuscript, “Multi-center improvement in screening for pain that affects activities in adults with cerebral palsy.” This new study, published in the Disability and Health Journal, demonstrates how quality improvement (QI) methods can be used to successfully standardize screening for pain that interferes with daily life among adults with CP across multiple centers.

Pain is Common in Adults with CP

Although cerebral palsy is typically considered a childhood condition, more people with CP are living well into adulthood and often experience secondary health challenges. Pain is one of the most prevalent and burdensome of these challenges, with earlier studies estimating that up to 70% of adults with CP live with pain. Despite this, there has been little consistency in how pain is screened or documented in adult CP care settings.

Standardizing Screening Through Quality Improvement

Using the CP Research Network’s QI infrastructure, three medical centers implemented standardized screening questions to identify not only whether adults with CP experience pain, but also whether that pain affects their ability to participate in activities. Screening rates improved dramatically—from a baseline of 42% of visits to over 90% after the intervention.

What the Study Found

Among 450 adult visits across the three centers:

• 44% of visits documented pain.
• Of those, 54% reported pain that limited activities.
• Women were significantly more likely to report both pain and pain that interfered with activities.
• Adults with greater mobility (GMFCS I) were more likely to report activity-limiting pain compared to those with higher support needs.
• Older age was also associated with a greater likelihood of experiencing pain.

Why This Matters

By integrating an easy to implement, standardized screening process into routine clinic visits, providers were able to better capture how pain impacts the daily lives of adults with CP. This work represents a crucial first step in addressing pain management as part of lifelong CP care. The findings highlight the importance of recognizing that adults with CP—particularly women and those who walk—are at heightened risk for pain that interferes with independence and quality of life.

Next Steps

The study team emphasizes that while screening is essential, more work is needed to understand and treat pain within a biopsychosocial framework—considering not just physical pain, but also the emotional and social factors that influence it. Future efforts will focus on refining data collection (e.g., distinguishing between self- and proxy-report) and expanding screening processes to additional CP care centers. This group of investigators have been funded by Cerebral Palsy Alliance Research Foundation to extend this work into the classification of pain in adults.  Pain classification is essential to choosing the best treatment intervention to relieve pain.

This multi-center QI initiative underscores the power of learning health networks like the CP Research Network to rapidly implement meaningful improvements in care.

The full article is available open access in the Disability and Health Journal here.