Standardizing Pain Screening for Adults with Cerebral Palsy

Pain is one of the most common and burdensome health challenges for adults with cerebral palsy (CP), yet it is not consistently screened for or documented during routine clinical care. A new multi-center study from the Cerebral Palsy Research Network (CP Research Network) shows that quality improvement (QI) methods can dramatically improve standardized screening for pain that interferes with daily activities, helping care teams better recognize when pain is affecting participation and independence.

The findings were published in Disability and Health Journal in the paper, “Multi-center improvement in screening for pain that affects activities in adults with cerebral palsy.” The Weinberg Family Cerebral Palsy Center's (WFCPC) Hana Azizi, MD and Elisabeth Bates, MSN, CPNP are co-authors on the study.

Using CP Research Network’s QI infrastructure, three medical centers implemented a standardized set of screening questions to capture not only whether adults with CP experience pain, but also whether that pain limits activities. Screening rates improved from 42% at baseline to over 90% following the intervention.

What the study found

Across adult clinic visits evaluated after screening practices were established, the team found:

• 44% of visits documented pain, and 54% of those reported pain that affected activities
• Pain and activity-limiting pain were more likely with increasing age and greater motor function
• Women were more likely to report both pain and pain that interfered with activities

By embedding a simple, standardized screening process into routine visits, clinical teams can more reliably identify when pain is limiting daily life and begin addressing it as a core part of adult CP care. The authors note that future work should refine data collection and expand screening and pain-focused improvement efforts to more CP care centers.

The WFCPC participates in the CP Research Network’s ongoing Improving Care for Adults with CP quality improvement initiative, which focuses on improving how pain is identified and documented during adult CP clinic visits to support better treatment decisions. The initiative brings together clinicians, researchers, nurse practitioners, and adults with CP to strengthen consistent pain screening and pain classification in routine care.

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