title: Pain in youths with neuromuscular disease.
abstract: 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.
authors.affiliation: Department of Rehabilitation Medicine, University of Washington School of Medicine, Seattle, Washington 98195, USA. jmengel@u.washington.edu
authors.forename: Joyce M
authors.initials: JM
authors.lastname: Engel
authors.forename: Deborah
authors.initials: D
authors.lastname: Kartin
authors.forename: Gregory T
authors.initials: GT
authors.lastname: Carter
authors.forename: Mark P
authors.initials: MP
authors.lastname: Jensen
authors.forename: Kenneth M
authors.initials: KM
authors.lastname: Jaffe
mesh_terms: D000293:Adolescent; D000700:Analgesics / Q000627:therapeutic use; D002648:Child; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D009136:Muscular Dystrophies / Q000150:complications; D009468:Neuromuscular Diseases / Q000150:complications*; D010146:Pain / Q000209:etiology* / Q000523:psychology; D059408:Pain Management; D010147:Pain Measurement; D011788:Quality of Life; D012893:Sleep Wake Disorders / Q000209:etiology; D055815:Young Adult
chemical_list: D000700:Analgesics