The Cerebral Palsy Research Network investigators*, led by Drs. Amy Bailes and Mary Gannotti, have a newly published article about our efforts to improve pain assessment in adults with CP during their healthcare visits.

The title of the article: First steps toward pain classification among adults with cerebral palsy: A modified Delphi Study was published on April 28, 2026, in Disability and Health Journal.

Pain is one of the most common symptoms adults with CP face. Healthcare providers must correctly identify the source and kind of pain the person is experiencing to select an effective treatment. Our research has shown that pain is often incorrectly classified in adults with CP. This study focuses on changing how pain is evaluated in adults with CP to support clinicians in identifying the most effective treatments.

To identify which pain-related questions clinicians should ask during a routine visit, the research team brought together 21 stakeholders of different professional and lived experience backgrounds affiliated with the CP Research Network to establish consensus around key areas that would support healthcare providers in correctly identifying the source and type of pain the person with CP is experiencing.

The panel narrowed questions to four priority areas to target during a routine outpatient visit. These questions will be added to two existing standard pain questions healthcare providers use. The area is followed by a description and then the level of agreement among the participants in parentheses.

1. Pain Location — assessed using the Michigan Body Map (95% agreement)
2. Pain Onset — “Is your pain lasting ≥3 months?” (100% agreement)
3. Pain Quality — a checklist of descriptors such as pins and needles, tingly, stinging, electrical shocks, numb, sore, tender, achy, deep, and steady (90% agreement)
4. Pain Intensity — a 0–10 numeric rating scale for average pain in the past week (90% agreement)

If you are an adult with CP and have felt that your pain was not fully understood or addressed by your care team, this project is working toward solutions. Having a standard, evidence-based set of questions that every provider asks across every CP Research Network-affiliated clinic means your pain experience is more likely to be captured accurately and consistently.

Better and more specific information about pain can lead to:

• More accurate referrals to pain medicine specialists
• Treatments matched to the actual type of pain you have
• Less reliance on non-specific approaches like opioids
• Research that can finally answer which treatments work best for which types of pain in CP

The next phase will use quality improvement (QI) methods to put these questions into practice across CP Research Network-affiliated centers. If this approach proves effective, this practice can be shared for other clinics and hospitals to implement as a best practice at their healthcare facilities.

The full published article about this study is available in the Disability and Health Journal at https://doi.org/10.1016/j.dhjo.2026.102080. This work was supported by the Cerebral Palsy Alliance Research Foundation and the Cerebral Palsy Research Network.

Please join us for our upcoming webinar on pain management for adults with CP on May 26th at 8pm ET with Dr. Eric Chin from Kennedy Krieger Institute in Baltimore, Maryland. He will be discussing his work on identifying the most promising treatment options for adults with CP.

*Congratulations to all of the authors who were part of the study team and publication, including clinician researchers and people with lived experience: Mary E. Gannotti, PhD; David J. Kohns; 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 M. Kreschmer, MA; Susan L. Koller; Lee Y. Schuh; Elizabeth R. Boyer; Mary M. Schmidt; Linda E. Krach, MD; Karen Pleasant; Eric M. Chin, MD; Edward A. Hurvitz, MD; and Amy F. Bailes, PhD, PT