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First steps toward pain classification among adults with cerebral palsy: A modified Delphi study
Mary E Gannotti1, David J Kohns2, Garey H Noritz3
1Department of Rehabilitation Sciences, University of Hartford, West Hartford, CT, USA.
Disability and Health Journal
|May 5, 2026
Summary
Experts established a consensus on key pain assessment domains for adults with cerebral palsy (CP). This framework includes location, onset, quality, and intensity, aiming to improve chronic pain management in CP patients.
Area of Science:
- Neurology
- Pain Medicine
- Rehabilitation Medicine
Background:
- Adults with cerebral palsy (CP) frequently experience chronic pain, often leading to misdiagnosis and inadequate treatment.
- Patient-reported outcome measures are crucial for pain assessment in routine outpatient settings for self-reporting adults with CP.
- A lack of consensus on relevant domains and items hinders effective pain assessment in this population.
Purpose of the Study:
- To achieve expert consensus on essential domains and specific items for assessing pain phenotypes in adults with CP during routine outpatient visits.
- To develop a standardized approach for light phenotype pain assessment in adults with cerebral palsy.
Main Methods:
- A nine-month modified Delphi study was conducted with 21 stakeholders from the Cerebral Palsy Research Network (CPRN).
- The study involved nine meetings and ten iterative surveys, adhering to the ACCORD guideline for consensus development.
- Consensus was defined as ≥75% agreement, with stages including domain identification, selection, and item evaluation.
Main Results:
- Four critical domains for light phenotype pain assessment were identified and prioritized: pain location, onset, quality, and intensity.
- Four standardized items were selected for each domain, including the Michigan Body Map, a 3-month duration item, descriptive terms, and a 0-10 numeric rating scale.
- All selected items achieved high consensus, ranging from 90-100% agreement, surpassing the 75% threshold.
Conclusions:
- A pragmatic, stakeholder-informed framework for pain assessment in adults with CP was successfully established through expert consensus.
- The identified domains and items represent a significant step towards standardized and effective pain management for adults with CP.
- This framework is slated for implementation and evaluation in future quality improvement initiatives within the CP community.
