Clinical features of children and adults with a muscular dystrophy using powered indoor/outdoor wheelchairs: disease features, comorbidities and complications of disability^*

References

• Ahistrom G, Lindvall B, Wenneberg S, et al. A comprehensive rehabilitation programme tailored to the needs of adults with muscular dystrophy. Clin Rehabil. 2006;20:132–141.
   PubMed Web of Science ®Google Scholar
• Narayanaswami P, Weiss M, Selcen D, et al. Evidence-based guideline summary: diagnosis and treatment of limb-girdle and distal dystrophies: report of the guideline development subcommittee of the American Academy of Neurology and the practice issues review panel of the American Association of Neuromuscular & Electrodiagnostic Medicine. Neurol. 2014;83:1453–1463.
   PubMed Web of Science ®Google Scholar
• Passamano L, Taglia A, Palladino A, et al. Improvement of survival in duchenne muscular dystrophy: retrospective analysis of 835 patients. Acta Myol. 2012;31:121–125.
   PubMedGoogle Scholar
• Theadom A, Rodrigues M, Roxburgh R, et al. Prevalence of muscular dystrophies: a systematic literature review. Neuroepidemiology. 2014;43:259–268.
   PubMed Web of Science ®Google Scholar
• Yiu EM, Kornberg AJ. Duchenne muscular dystrophy. J Paediatr Child Health. 2015;51:759–764.
   PubMed Web of Science ®Google Scholar
• Wood L, Evangelista T, Williams M, et al. UK patient registry for facioscapulohumeral muscular dystrophy (FSHD). Neuromusc Disord. 2015;25:S36.
   Web of Science ®Google Scholar
• Van Den Bergen JC, Wokke BHA, Van Damme P, et al. Development of a disease severity scale for Becker muscular dystrophy. Neuromusc Disord. 2014;24:795.
   Web of Science ®Google Scholar
• Hilbert JE, Kissel JT, Luebbe EA, et al. If you build a rare disease registry, will they enroll and will they use it? Methods and data from the National Registry of Myotonic Dystrophy (DM) and Facioscapulohumeral Muscular Dystrophy (FSHD). Contemporary Clin Trials. 2012;33:302–311.
   PubMed Web of Science ®Google Scholar
• Engel JM, Kartin D, Carter GT, et al. Pain in youths with neuromuscular disease. Am J Hosp Palliat Care. 2009;26:405–412.
   PubMed Web of Science ®Google Scholar
• Rodger S, Steffensen BF, Lochmuller H. Transition from childhood to adulthood in Duchenne muscular dystrophy (DMD). Orphanet J Rare Dis. 2012;suppl 2:7.
   Google Scholar
• McAdam LC, Mah J, Biggar WD. Becoming an adult with Duchenne muscular dystrophy in Canada. Neuromusc Disord. 2014;24:855.
   Web of Science ®Google Scholar
• Rodger S, Woods KL, Bladen CL, et al. Care provision for adults with Duchenne muscular dystrophy in the UK: compliance with international consensus care guidelines. Neuromusc Disord. 2015;25:S12.
   Google Scholar
• Davies A, De Souza LH, Frank AO. Changes in the quality of life in severely disabled people following provision of powered indoor/outdoor chairs. Disabil Rehabil. 2003;25:286–290.
   PubMed Web of Science ®Google Scholar
• Bushby K, Finkel R, Birnkrant DJ, et al. Diagnosis and management of Duchenne muscular dystrophy, part 2: implementation of multidisciplinary care. Lancet Neurol. 2010;9:177–189.
   PubMed Web of Science ®Google Scholar
• Pousada García T, Groba Gonzílez B, Nieto Rivero L, et al. Exploring the psychosocial impact of wheelchair and contextual factors on quality of life of people with neuromuscular disorders. Assist Technol. 2015;27:246–256.
   PubMed Web of Science ®Google Scholar
• Salatino C, Andrich R, Converti RM, et al. An observational study of powered wheelchair provision in Italy. Assist Technol. 2016;28:41–52.
   PubMed Web of Science ®Google Scholar
• De Souza LH, Frank AO. Problematic clinical features of powered wheelchair users with severely disabling multiple sclerosis. Disabil Rehabil. 2015;37:990–996.
   PubMed Web of Science ®Google Scholar
• Dicianno BE, Lieberman J, Schmeler M, et al. RESNA position on the application of tilt, recline, and elevating leg rests for wheelchairs: 2015 current state of the literature. Arlington, VA, USA: RESNA; 2015.
   Google Scholar
• Mannlein J, Pangilinan PH. Wheelchair seating for children with Duchenne Muscular Dystrophy. J Pediatr Rehabil Med. 2008;1:225–235.
   PubMedGoogle Scholar
• Parker AE, Robb SA, Chambers J, et al. Analysis of an adult Duchenne muscular dystrophy population. QJM. 2005;98:729–736.
   PubMed Web of Science ®Google Scholar
• Richardson M, Frank AO. Electric powered wheelchairs for those with muscular dystrophy: problems of posture, pain and deformity. Disabil Rehabil Assist Technol. 2009;4:181–188.
   PubMedGoogle Scholar
• Smith AE, McMullen K, Jensen MP, et al. Symptom burden in persons with myotonic and facioscapulohumeral muscular dystrophy. Am J Phys Med Rehabil. 2014;93:387–395.
   PubMed Web of Science ®Google Scholar
• Lord J, Behrman B, Varzos N, et al. Scoliosis associated with Duchenne muscular dystrophy. Arch Phys Med Rehabil. 1990;71:13–17.
   PubMed Web of Science ®Google Scholar
• Heller KD, Forst R, Forst J, et al. Scoliosis in Duchenne muscular dystrophy: aspects of orthotic treatment. Prosthet Orthot Int. 1997;21:202–209.
   PubMed Web of Science ®Google Scholar
• Kang PB, Morrison L, Iannaccone ST, et al. Evidence-based guideline summary: evaluation, diagnosis, and management of congenital muscular dystrophy: report of the guideline development subcommittee of the American academy of neurology and the practice issues review panel of the American association of neuromuscular and electrodiagnostic medicine. Neurology. 2015;84:1369–1378.
   PubMed Web of Science ®Google Scholar
• De Souza LH, Frank AO. Rare diseases: matching wheelchair users with rare metabolic, neuromuscular or neurological disorders to electric powered indoor/outdoor wheelchairs (EPIOCs). Disabil Rehabil. 2015;38:1547–1556.
   PubMed Web of Science ®Google Scholar
• Naidoo V, Putnam M, Spindel A. Key focal areas for bridging the fields of aging and disability: findings from the growing older with a disability conference. Int J Integr Care. 2012;12:e201.
   PubMed Web of Science ®Google Scholar
• Frank AO, Ward JH, Orwell NJ, et al. Introduction of the new NHS Electric Powered Indoor/outdoor Chair (EPIOC) service: benefits, risks and implications for prescribers. Clin Rehabil. 2000;14:665–673.
   PubMed Web of Science ®Google Scholar
• Scannell BP, Yaszay B, Bartley CE, et al. Surgical correction of scoliosis in patients with duchenne muscular dystrophy: 30-year experience. J Pediatr Orthop. 2016. [Epub ahead of print]. doi: 10/1097/BPO.0000000000000717
   PubMed Web of Science ®Google Scholar
• Harvey A, Baker L, Williams K. Non-surgical prevention and management of scoliosis for children with Duchenne muscular dystrophy: what is the evidence?. J Paediatr Child Health. 2014;50:E3–E9.
   PubMed Web of Science ®Google Scholar
• Tian C, Wong B, Hornung L, et al. Age-specific prevalence of osteoporosis and frequency of poor bone health indices in duchenne muscular dystrophy. Neuromusc Disord. 2014;24:857.
   Web of Science ®Google Scholar
• Coveney E, O'Halpin D, Fitzgerald RJ. Spontaneous deep venous thrombosis in Duchenne muscular dystrophy. Pediatr Surg Int. 1993;8:368–370.
   Web of Science ®Google Scholar
• Muscular Dystrophy Campaign. Wheelchair provision for children and adults with muscular dystrophy and other neuromuscular conditions: best practice guidelines. 2nd ed. London: Muscular Dystrophy Campaign; 2011.
   Google Scholar
• British Society of Rehabilitation Medicine. Specialised wheelchair seating national clinical guidelines. Report of a multidisciplinary expert group (Chair: Marks, LJ). London: British Society of Rehabilitation Medicine; 2004.
   Google Scholar
• Frank AO, Ellis K, Yates M. Use of the voucher scheme for provision of Electric Powered Indoor/outdoor Wheelchairs (EPIOCs). Posture Mobil. 2008;23:17–26.
   Google Scholar
• Frank AO, De Souza LH. Recipients of Electric Powered Indoor/outdoor Wheelchairs (EPIOCs) provided by a National Health Service: a cross sectional study. Arch Phys Med Rehabil. 2013;94:2403–2409.
   PubMed Web of Science ®Google Scholar
• Bushby K. Duchenne muscular dystrophy: medical factsheet. London: Muscular Dystrophy Campaign; 2002.
   Google Scholar
• Werge B, Rahbek J, Madsen A, et al. Physical ability and health in a non-steroid population of 77 adult patients with Duchenne muscular dystrophy. Neuromusc Disord. 2014;24:854–855.
   Web of Science ®Google Scholar
• Pangalila RF, van den Bos GA, Bartels B, et al. 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;96:1242–1247.
   PubMed Web of Science ®Google Scholar
• Evans S, Neophytou C, De Souza LH, et al. Young people's experiences using electric powered indoor-outdoor wheelchairs (EPIOCs): potential for enhancing users' development?. Disabil Rehabil. 2007;19:1281–1294.
   Web of Science ®Google Scholar
• Evans S, Frank A, Neophytou C, et al. Older adults’ use of, and satisfaction with, electric powered indoor/outdoor wheelchairs. Age Ageing. 2007;36:431–435.
   PubMed Web of Science ®Google Scholar
• Douvillez B, Braillon P, Hodgkinson I, et al. Pain, osteopenia and body composition of 22 patients with Duchenne muscular dystrophy: a descriptive study. Ann Readapt Med Phys. 2005;48:616–622.
   PubMedGoogle Scholar
• Pellegrini N, Guillon B, Prigent H, et al. Optimization of power wheelchair control for patients with severe Duchenne muscular dystrophy. Neuromusc Disord. 2004;14:297–300.
   PubMed Web of Science ®Google Scholar
• Umayahara Y, Nakashima M, Kuwata M, et al. Relationships between spinal deformities and chest wall deformities in patients with duchenne muscular dystrophy. Physiother. 2015;101:eS1557.
   Google Scholar
• Yasuma F, Kato T, matsuoka Y, et al. Row-a-boat phenomenon: respiratory compensation in advanced Duchenne Muscular Dystrophy. Chest. 2004;119:1836–1839.
   Web of Science ®Google Scholar
• James KA, Cunniff C, Apkon SD, et al. Risk factors for first fractures among males with Duchenne or Becker muscular dystrophy. J Pediatr Orthop. 2015;35:640–644.
   PubMed Web of Science ®Google Scholar
• Cuijie W, Haipo Y, Xiaona F, et al. Duchenne and Becker muscular dystrophy complicated with epilepsy. Chin J Pediatr. 2015;53:274–279.
   Google Scholar
• Sandu C, Tarta-Arsene O, Butoianu N, et al. Epilepsy in Duchene muscular dystrophy patients. Eur J Paediatr Neurol. 2013;17:S134.
   Google Scholar
• Kang PB, Morrison L, Iannaccone ST, et al. Evidence-based guideline summary: evaluation, diagnosis, and management of congenital muscular dystrophy: report of the guideline development subcommittee of the American academy of neurology and the practice issues review panel of the American association of neuromuscular and electrodiagnostic medicine. Neurology. 2015;84:1369–1378.
   PubMed Web of Science ®Google Scholar
• Clark J, Michael S, Morrow M. Wheelchair postural support for young people with progressive neuromuscular disorders. Int J Therapy Rehab. 2004;11:3765–3773.
   Google Scholar
• Furderer S, Hopf C, Zollner J, et al. Scoliosis and hip flexion contracture in Duchenne muscular dystrophy. Zeitschrift Fur Orthopadie Und Ihre Grenzgebiete. 2000;138:131–135.
   PubMed Web of Science ®Google Scholar
• Shapiro F, Zurakowski D, Bui T, et al. Progression of spinal deformity in wheelchair-dependent patients with Duchenne muscular dystrophy who are not treated with steroids: coronal plane (scoliosis) and sagittal plane (kyphosis, lordosis) deformity. Bone and Joint J. 2014;96 B:100–105.
   PubMed Web of Science ®Google Scholar
• Lehmann-Horn F, Weber MAü, Nagel AM, et al. Rationale for treating oedema in Duchenne muscular dystrophy with eplerenone. Acta Myol. 2012;31:31–39.
   PubMedGoogle Scholar
• Liu M, Mineo K, Hanayama K, et al. Practical problems and management of seating through the clinical stages of Duchenne’s muscular dystrophy. Arch Phys Med Rehabil. 2003;84:818–824.
   PubMed Web of Science ®Google Scholar
• Landfeldt E, Lindgren P, Bell CF, et al. The burden of Duchenne muscular dystrophy: an international, cross-sectional study. Neurology. 2014;83:529–536.
   PubMed Web of Science ®Google Scholar
• De Souza LH, Frank AO. Matching wheelchair users with severe spinal cord injuries to provision of electric powered indoor/outdoor wheelchairs (EPIOCs). Paper presented at: The 5th European Seating Symposium; 2016; Dublin, Republic of Ireland.
   Google Scholar
• Frank AO, De Souza LH. Problematic clinical features of children and adults with cerebral palsy who use electric powered indoor/outdoor wheelchairs: a cross-sectional study, Assistive Technology; 2016, DOI: 10.1080/10400435.2016.1201873.
   Google Scholar