Pink and white publication of ‘Research CP -- Setting a Patient-Centered Research Agenda for Cerebral Palsy’

Adults with cerebral palsy and chronic pain experience: A cross-sectional analysis of patient-reported outcomes from a novel North American registry
Disability and Health Journal, Cristina A. Sarmiento, Mary E. Gannotti, Paul H. Gross, Deborah E. Thorpe, Edward A. Hurvitz, Garey H. Noritz, Susan D. Horn, Michael E. Msall, Henry G. Chambers, Linda E. Krach
November 13, 2023


Chronic pain is common among adults with cerebral palsy (CP) and an area of priority for research and treatment.

Describe the pain experience and its functional and quality of life impact among adults with CP with chronic pain in the community.

Cross-sectional analysis of adult patient-reported outcomes collected by the Cerebral Palsy Research Network Community Registry.

Among all participants in the Community Registry, n = 205 reported having chronic pain, and 73 % of those (n = 149) completed the Chronic Pain Survey Bundle (75 % female; mean age 43 years (SD 14 years); 94 % White; 91 % non-Hispanic). Back and weight-bearing joints of lower extremities were most frequently reported as painful. There were no differences in average pain severity scores between varying GMFCS levels (H = 6.25, p = 0.18) and age groups (H = 3.20, p = 0.36). Several nonpharmacologic interventions were most frequently reported as beneficial. Participants with moderate to severe average pain scores (5-10) had higher levels of pain interference (p < 0.01) and depression (p < 0.01), and lower levels of satisfaction with social roles (p < 0.01) and lower extremity function (p < 0.01). Pain interference was significantly positively correlated with depression, and negatively correlated with upper and lower extremity function and satisfaction with social roles.

Chronic pain is experienced by adults with CP of varying ages and functional levels and is associated with several adverse quality of life and functional outcomes. Improved understanding of chronic pain in this population will facilitate the development and study of treatment interventions optimizing health, function, participation, and quality of life.

The information from this page appears in our free and downloadable cerebral palsy tool kit.