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

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

doi:10.1016/j.dhjo.2023.101546

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. Online ahead of print.

Authors

Affiliations

¹ University of Colorado Anschutz, Department of Physical Medicine and Rehabilitation, 13123 East 16th Avenue, Box 285, Aurora, CO, 80045, USA. Electronic address: cristina.sarmiento@cuanschutz.edu.
² University of Hartford, Department of Rehabilitation Sciences, 200 Bloomfield Avenue, West Hartford, CT, 06117, USA. Electronic address: gannotti@hartford.edu.
³ University of Utah Medicine, Department of Population Health Sciences, 95 Chipeta Way, Williams Building, Room 1N410, Salt Lake City, UT, 84108, USA. Electronic address: paul@cprn.org.
⁴ University of North Carolina, Chapel Hill, Department of Allied Health Sciences, Bondurant Hall, CB #7135, Chapel Hill, NC, 27599, USA. Electronic address: dthorpe@med.unc.edu.
⁵ University of Michigan Medical School, Department of Physical Medicine and Rehabilitation, 325 E Eisenhower Parkway Suite 100, Ann Arbor, MI, 48108, USA. Electronic address: ehurvitz@med.umich.edu.
⁶ Nationwide Children's Hospital, Complex Health Care Program, 700 Children's Drive, Columbus, OH, 43205, USA. Electronic address: garey.noritz@nationwidechildrens.org.
⁷ University of Utah Medicine, Department of Population Health Sciences, 95 Chipeta Way, Williams Building, Room 1N410, Salt Lake City, UT, 84108, USA. Electronic address: susan.horn1@comcast.net.
⁸ University of Chicago Kennedy Research Center, 5721 S. Maryland Avenue, Chicago, IL, 60637, USA. Electronic address: mmsall@bsd.uchicago.edu.
⁹ University of California, San Diego, Department of Orthopedic Surgery, 3030 Children's Way 3rd Floor, San Diego, CA, 92123, USA. Electronic address: hankchambers@me.com.
¹⁰ Gillette Children's, Department of Physical Medicine and Rehabilitation, 200 University Avenue East, Mail Code 435-105, St. Paul, MN, 55101, USA. Electronic address: lkrach@gillettechildrens.com.

PMID: 37993325
DOI: 10.1016/j.dhjo.2023.101546

Abstract

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

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

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

Results: 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.

Conclusions: 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.

Keywords: Cerebral palsy; Chronic pain; Lifespan care.