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Pain in Youths With Neuromuscular Disease

Department of Rehabilitation Medicine, University of Washington School of Medicine, Seattle, Washington, jmengel{at}u.washington.edu

Deborah Kartin, PT, PhD

Department of Rehabilitation Medicine, University of Washington School of Medicine, Seattle, Washington

Gregory T. Carter, MD, MS

Department of Rehabilitation Medicine, University of Washington School of Medicine, Seattle, Washington

Mark P. Jensen, PhD

Department of Rehabilitation Medicine, University of Washington School of Medicine, Seattle, Washington

Kenneth M. Jaffe, MD

Department of Rehabilitation Medicine, University of Washington School of Medicine, Seattle, Washington

To examine the prevalence and characteristics of pain in children with neuromuscular disease (NMD), 42 youths with NMD underwent a comprehensive evaluation including a detailed intake interview and structured questionnaire that included demographic and functional data. Youths who reported chronic pain were further queried about pain characteristics, locations, and intensity using an 11-point numerical rating scale and a modified Brief Pain Inventory (BPI). The sample consisted of 24 males (57%) and 18 females (43%), ages ranging from 9 to 20 years (M = 14.8, SD = 2.96). Participants included 14 (37%) with Duchenne muscular dystrophy, 6 (14%) with myotonic dystrophy, 2 (5%) with Becker dystrophy, 2 (5%) with limb-girdle dystrophy, 2 (5%) with congenital muscular dystrophy, 1 (2%) facioscapulohumeral, and 15 (36%) were classified as ‘‘other NMD.’’ Twenty-one (50%) were ambulatory; 26 (62%) used power wheelchairs/scooters, 9 (2%) used manual wheelchairs, 3 (.07%) used crutches/canes, and 1 (2%) used a walker. A total of 23 (55%) of the youths reported having chronic pain. Current pain intensity was 1.30 (range = 0-6), mean pain intensity over the past week was 2.39 (range = 0-7), mean pain duration was 8.75 hours (SD = 12.84). Pain in the legs was most commonly reported and 83% reported using pain medications. This study indicates that chronic pain is a significant problem in youths with NMD. These data strongly support making comprehensive pain assessment and management an integral part of the standard of care for youths with NMD.

Key Words: muscular dystrophy • neuromuscular disease • chronic pain • disability • myopathy

American Journal of Hospice and Palliative Medicine®, Vol. 26, No. 5, 405-412 (2009)
DOI: 10.1177/1049909109346165


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