Approximately 70% of adults with CP report some type of pain with increasing rates of chronic pain with aging. Prior work has shown that pain has significant implications for activity and quality of life for adults with CP although the long-term effect of pain is not known. Not surprisingly, understanding chronic pain and the treatment of pain in adults with CP has been identified by individuals with CP, caregivers and providers and the National Institute of Health as a top CP research priority. The Cerebral Palsy Research Network is providing a rich opportunity to collect systematic, longitudinal data on people with CP such as the data used in this study.
The authors of this study sought to describe the pain intensity, interference, locations, changes, and helpful treatments experienced by participants as well as how quality of life and function are affected by pain. Information was collected from 2019 through 2022 through including functional changes and information about chronic pain through surveys circulated by the CP Research Network in our Community Registry which is hosted in MyCP — our personalized web portal on CPRN.org. The authors are inspired to continue to pursue learning about pain experience in adults with CP because they know that chronic pain is a significant, common condition for many adults with CP, affecting so many aspects of life – mobility and daily function, tone, sleep, mental health, quality of life, social participation, and more. However, they don’t yet have good ways to accurately identify, classify, and treat pain in adults with CP. The Community Registry allows adults with CP to tell us about their pain experiences so clinicians and researchers can better understand chronic pain in CP, with the goal of ultimately improving its management. We discussed some of these findings in a MyCP webinar.
Among participants in the Community Registry where community members report their experiences with CP, 78 % reported having chronic pain. The average age of pain onset was 28 years with low back and legs the most frequently reported areas of pain. Pain interfered most with work, walking and sleep. GMFCS level and age did not affect severity of pain reported. Individuals most frequently tried physical therapy, massage and exercise and stated that these non-pharmaceutical treatments helped to decrease the pain although for the vast majority of participants, their pain was worse than or the same as it was a year prior. Adults with CP with moderate-to-severe pain reported that their pain interfered with function and activities and had greater depression and lower satisfaction with social roles compared to those with mild pain.
Unfortunately, chronic pain in adults with CP often goes unrecognized and under-treated. Many adults with CP tend not to seek professional treatment and rather self-manage their pain, highlighting a critical gap in clinical practice. The authors recommend based on this work that all adults with CP, regardless of age or degree of physical disability get screened for pain, as they are at higher risk for chronic pain at younger ages compared to the general population. Screening and classifying pain is the goal of one of our research projects funding by our partner CP Alliance Research Foundation.
The full journal article is available for free download for the next 15 days in The Disability and Health Journal. After January 1, 2024, only subscribers to The Disability and Health Journal will have access. Dr. Cristina A. Sarmiento, MD first author of this publication, practices at the University of Colorado Anschutz, Department of Physical Medicine and Rehabilitation specializing in inpatient and consult pediatric rehabilitation medicine, transitions of care for adolescents and young adults with disabilities. The CP Research Network is particularly excited for Dr. Sarmiento, a young investigator / clinician who has been mentored by several clinicians in our network including her co-authors. She is also the recipient of an Accelerator Award to set priorities in adult CP research.
*Mary E. Gannotti, PT, PhD, Paul H. Gross, BA, Deborah E. Thorpe, PT, PhD, Edward A. Hurvitz, MD, Garey H. Noritz, MD, Susan D. Horn, PhD, Michael E. Msall, MD, Henry G. Chambers, MD, Linda E. Krach, MD