Publications and Presentations

Adults with cerebral palsy (CP) commonly experience chronic pain that is often misclassified, contributing to suboptimal treatment. For adults that can self-report, use of patient-reported measures to assess pain or light phenotype assessment, is a feasible approach for routine outpatient clinics, but consensus on relevant domains and items is lacking.

To establish expert consensus on key domains and corresponding items for light phenotype pain assessment during routine outpatient visits for adults with CP.

We conducted a nine-month modified Delphi study involving 21 stakeholders-including clinicians, pain experts, and individuals with lived experience affiliated with the Cerebral Palsy Research Network (CPRN). Through nine meetings and ten iterative surveys, we used the ACCORD guideline to ensure rigorous consensus development. Agreement was defined as ≥75% endorsement. The process included three stages: domain identification, domain selection, and item evaluation and selection. Survey formats included ratings, rankings, yes/no confirmations, and free text responses.

The expert panel identified and prioritized four domains essential for light phenotype assessment: pain location, onset, quality, and intensity. Four standardized items were selected for each domain, including the Michigan Body Map for location, a three-month duration item for onset, descriptive terms for quality, and a 0–10 numeric rating for intensity. The four selected items exceeded the 75% consensus threshold (90–100% agreement).

This modified Delphi study achieved consensus on a pragmatic and stakeholder-informed framework for pain assessment in adults with CP. Identified domains and items will be implemented and evaluated in future quality improvement initiatives.