Prevalence of chronic pain in Duchenne muscular dystrophy patients in non-ambulatory stage
Main Article Content
Keywords
Duchenne muscular dystrophy, pain, teenagers, adults, adolescents
Abstract
Introduction: Chronic pain is a frequent symptom in patients with Duchenne muscular dystrophy (DMD) as reported, in up to 73%, affecting their normal activities, participation and quality of life; however it is an underdiagnosed symptom, and therefore, undertreated. Objective: to establish the prevalence of chronic pain in a population with non-ambulatory DMD attending Instituto teletón Santiago (ItS). Materials and methods: Descriptive, cross-sectional study in DMD patients of Instituto teletón Santiago, of 12 years old and older, who were in an early or late non-ambulatory stage. By means of a questionnaire designed by the authors, adapted from ‘Brief Pain Inventory’ and ‘ID-Pain’, and administered via telephone, it was possible to obtain data on the presence of acute, chronic pain and its intensity, frequency, location, clinical characteristics and interference with daily life activities and the use of analgesic drugs. Data collected helped to do an estimation of the prevalence of pain in the last week, chronic pain as well as summary measures for location, intensity and clinical characteristics. Results:of 74 active patients with DMD and in compliance with the inclusion criteria, 23 subjects responded the questionnaire (31% response rate); average age was 18.3 years, and 9 months since loss of walking ability; prevalence of acute pain was 13% and 13% for chronic pain; most common localization was in the hips, followed by neck, spine and lower limbs; duration and frequency were variable and of moderate intensity. Conclusion: Pain has a lower prevalence in the studied population compared to the literature, however, it affects multiple locations and has an impact on their daily activities, and the-refore it is important to record the presence of chronic pain in clinical practice. It is necessary to get a higher response rate in future studies and quantify pain with an instrument developed especially for this population.
References
Loeser J, treede R-D. the Kyoto protocol of IASP Basic Pain terminology. Pain 2008; 137 (3): 473-7.
McGrath P, Walco G, turk D, Dworkin R, Brown M, Davidson K. Core outcome Domains and Measures for Pediatric Acute and Chronic/Recurrent Pain Clinical trials: PedIMMPACt Recommendations. J Pain 2008; 9 (9): 771-83.
Henschke N, Kamper S, Maher CG. the epidemiology and economic consequences of pain. Mayo Clin Proc 2015; 90 (1): 139-47.
Jensen M, Abresch R, Carter G, McDonald C. Chronic Pain in Persons With Neuromuscular Disease. Arch Phys Med Rehabil 2005; 86: 1155-63.
Engel J, Kartin D, Carter G, Jensen M, Jaffe K. Pain in youths with neuromuscular disease. Am J Hosp Palliat Med 2009; 26 (5): 405-12.
Pangalila R, Van den Bos G, Bartels B, Bergen M, Stam H, Roebroeck M. Prevalence of Fatigue, Pain, and Affective Disorders in Adults With Duchenne Muscular Dystrophy and their Associations With Quality of Life. Arch Phys Med Rehabil 2015; 96: 1242-7.
Roth-Isigkeit A, thyen U, Stöven H, Schwarzenberger J, Schmucker P. Pain amog children and adolescents: restrictions in daily living and triggering factors. Pedia-trics 2005; 115 (2): 152-62.
Bray P, Bundy AC, Ryan MM, North K, Burns J. Health status of boys with Duchenne muscular dystrophy: A parent’s perspective. J Paediatr Child Health 2011; 47 (8): 557-62.
Zebracki K, Drotar D. Pain and activity limitations in children with Duchenne or Becker muscular dystrophy. Dev Med Child Neurol 2008; 50 (7): 546-52.
Dias da Silva t, Massetti t, Bandeira C, Lopes I, Arab C, Aparecida F. Pain characterization in Duchenne muscular dystrophy. Arq Neuro-Psiquiatr 2016; 74 (9): 767-74.
Lager C, Kroksmark A-K. Pain in adolescents with spinal muscular atrophy and Duchenne and Becker muscular dystrophy. Eur J Paediatr Neurol 2015; 19 (5): 537-46.
Bendixen R, Lott D, Senesac C, Marthur S, Vadnen-borne K. Participation in daily life activities and its relationship to strength and functional measures in boys with Duchenne muscular dystrophy. Disabil Rehabil 2014; 36 (22): 1918-23.
Keller S, Bann CM, Dodd SL, Schein J, Mendoza tR, Cleeland CS. Validity of the brief pain inventory for use in documenting the outcomes of patients with noncancer pain. Pain 2004; 20 (5): 309-18.
Gálvez R, Pardo A, Cerón JM, Villasante F, Aranguren JL, Saldaña Mt. Adaptación al castellano y validación psicométrica del cuestionario ID-Pain para la detección de dolor neuropático. Med Clin (Barc). 2008; 131 (15): 572-8.
de Groot I, Voet N, van Middendorp H, Knoop H, Rahbek J, van Engelen B. 184th ENMC international workshop: Pain and fatigue in neuromuscular disorders. Neuromuscul Disord 2013; 23: 1028-32.
Bushby K, Finkel R, Birnkrant D, Case L, Clemens P, Cripe L. Diagnosis and management of Duchenne muscular dystrophy, part 2: implementation of multi-disciplinary care. Lancet Neurol 2010; 9 (2): 177-89.
Michaleff Z, Kamper S, Stinson J, Williams C, Cam-pbell P, Dunn K. Measuring Musculoskeletal Pain in Infants, Children, and Adolescents. J orthop Sport Phys ther 2017; 47 (7): 712-30.
Jacques MF, Stockley RC, Bostock EI, Smith J, DeGo-ede CG, Morse CI. Frequency of reported pain in adult males with muscular dystrophy. PLoS one 2019; 14 (2).
Guy-Coichard C, Nguyen t, Delorme t, Francois B. Pain in Hereditary Neuromuscular Disorders and Myasthenia Gravis: A National Survey of Frequency, Characteristics, and Impact. J Pain Symptom Manage 2008; 35 (1): 40-50.
Palermo tM. Impact of recurrent and chronic pain on child and family daily functioning: A critical review of the literature. J Dev Behav Pediatr 2000; 21 (1): 58-69.
Hunfeld JAM, Perquin CW, Duivenvoorden HJ, et al. Chronic pain and its impact on quality of life in adoles-cents and their families. J Pediatr Psychol 2001; 26 (3): 145-53.
Fillingim RB, Loeser JD, Baron R, Edwards RR. Assessment of Chronic Pain: Domains, Methods, and Mechanisms. J Pain 2016; 17 (9): t10-t20. D. RoCHA et al.
Article Sidebar
Article Details
This work is licensed under a Creative Commons Attribution 4.0 International License.