Adults with cerebral palsy and chronic pain experience: A cross-sectional analysis of patient-reported outcomes from a novel North American registry

Prepared by Christa Weigel

Citation: Sarmiento CA, Gannotti ME, Gross PH, Thorpe DE, Hurvitz EA, Noritz GH, Horn SD, Msall ME, Chambers HG, Krach LE. Adults with cerebral palsy and chronic pain experience: A cross-sectional analysis of patient-reported outcomes from a novel North American registry. Disabil Health J. 2023 Nov 13:101546. doi: 10.1016/j.dhjo.2023.101546.

Study type/population: This cross-sectional study collected patient-reported outcome data from the Chronic Pain Survey Bundle from adults (>18 years) with cerebral palsy (CP) enrolled in the Cerebral Palsy Research Network Community Registry from April 2019 to March 2022.

Key findings: Of the 263 adult participants, 78% (n=205) reported chronic pain, and 45% were currently receiving pain treatment. Most participants had spastic CP and higher functional ability (GMFCS I/II, MACS I/II, CFCS I/II). Average age of pain onset was 28 years. The most frequent pain locations included lower back, hips, legs, and knees; most painful locations were lower back (most severe), hips, legs, feet, and neck. Pain treatment was often ineffective with 70% reporting <50% pain relief within the last 24 hours. Interventions that helped pain the most included physical therapy, over-the-counter medication, massage, exercise, and non-opioid prescription medications. Twenty-two people reported using opioids to manage pain, with 36% having a score suggesting possible misuse. Chronic pain adversely affected quality of life (QOL) and function, with higher levels of pain interference compared to the general population.

Translation to practice: Chronic pain begins early in adulthood and occurs at a high rate (78%), supporting the need to screen for pain in all adults with CP. Despite high pain prevalence, less than half currently receive pain treatment, indicating a critical gap in clinical care. While multiple non-pharmacologic interventions were identified, improvement in pain was limited, indicating the need for further research on the efficacy of interventions to mitigate pain occurrence and interference.