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Disability and Rehabilitation Volume 41, 2019 - Issue 14
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Original Article

The prevalence and severity of disease-related disabilities and their impact on quality of life in neuromuscular diseases

Isaac BosDepartment of Neurology, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands; Correspondence[email protected]
,
Klaske WyniaDepartment of Neurology, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands; ;Department of Community and Occupational Health, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands
,
Josué AlmansaDepartment of Community and Occupational Health, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands
,
Gea DrostDepartment of Neurology, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands;
,
Berry KremerDepartment of Neurology, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands;
&
Jan KuksDepartment of Neurology, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands;
Pages 1676-1681 | Received 11 Oct 2017, Accepted 24 Feb 2018, Published online: 08 Mar 2018

Reference

  • Bos I, Kuks J, Wynia K. Development and testing psychometric properties of an ICF-based health measure: the neuromuscular disease impact profile. J Rehabil Med. 2015;47:445–453.
  • Marchettini P, Lacerenza M, Mauri E, et al. Painful peripheral neuropathies. Curr Neuropharmacol. 2006;4:175–181.
  • Phillips M, Flemming N, Tsintzas K. An exploratory study of physical activity and perceived barriers to exercise in ambulant people with neuromuscular disease compared with unaffected controls. Clin Rehabil. 2009;23:746–755.
  • Peric' S, Rakocevic-Stojanovic V, Stevic Z, et al. Health-related quality of life in patients with myotonic dystrophy type 1 and amyotrophic lateral sclerosis. Acta Neurol Belg. 2010;110(1):71–77.
  • Graham C, Rose M, Grunfeld E, et al. A systematic review of quality of life in adults with muscle disease. J Neurol. 2011;258:1581–1592.
  • Barcaccia B. Quality of life: everyone wants it, but what is it? Forbes/Education. 2013 Sep 4. Available from: https://www.forbes.com/sites/iese/2013/09/04/quality-of-life-everyone-wants-it-but-what-is-it/#48b72942635d
  • Post MW. Definitions of quality of life: What has happened and how to move on. Top Spinal Cord Inj Rehabil. 2014;20:167–180.
  • Bottomly A. The cancer patient and quality of life. The Oncologist. 2002;7:120–125.
  • Teunissen LL, Notermans NC, Franssen H, et al. Disease course of Charcot-Marie-Tooth disease type 2: a 5-year follow-up study . Arch Neurol. 2003;60:823–828.
  • Grootenhuis MA, de Boone J, van der Kooi AJ. Living with muscular dystrophy: health related quality of life consequences for children and adults. Health Qual Life Outcomes. 2007;5:31.
  • Teunissen LL, Eurelings M, Notermans N, et al. Quality of life in patients with axonal polyneuropathy. J Neurol. 2000;247:195–199.
  • Carter GT, Han JJ, Abresch RT, et al. The importance of assessing quality of life in patients with neuromuscular disorders. Am J Hosp Palliat Care. 2006;23:493–497.
  • Abresch R, Carter G, Jensen M, et al. Assessment of pain and health-related quality of life in slowly progressive neuromuscular disease. Am J Hosp Palliat Care. 2002;19:39–48.
  • Poliakov I, Toth C. The impact of pain in patients with polyneuropathy. Eur J Pain. 2011;15:1015–1022.
  • Kalkman JS, Schillings ML, van der WSP, et al. Experienced fatigue in facioscapulohumeral dystrophy, myotonic dystrophy, and HMSN-I. J Neurol NeurosurgPsychiatry. 2005;76:1406–1409.
  • Antonini G, Soscia F, Giubilei F, et al. Health-related quality of life in myotonic dystrophy type 1 and its relationship with cognitive and emotional functioning. J Rehabil Med. 2006;38:181–185.
  • WHO. International Classification of Functioning, Disability and Health (ICF). Geneva: World Health Organization; 2001.
  • Bos I, Kuks JBM, Almansa J, et al. Stability and relative validity of the neuromuscular disease impact profile (NMDIP). BMC Neurol. 2017;17:87.
  • Ware JE, Jr, Sherbourne CD. The MOS 36-item short-form health survey (SF-36). I. conceptual framework and item selection. Med Care. 1992;30:473–483.
  • The WHOQOL Group. Development of the world health organization WHOQOL-bref quality of life assessment. World Health Forum. 1998;28:551–558.
  • Brooks R. EuroQol: the current state of play. Health Policy. 1996;37:53–72.
  • Rowland LP, McLeod JG. Classification of neuromuscular disorders. J Neurol Sci. 1994;124 Suppl:109–130.
  • Field A. Discovering statistics using SPSS. 3rd edition. London (UK): SAGE Publications Ltd; 2009.
  • Merkies IS, Kieseier BC. Fatigue, pain, anxiety and depression in Guillain-Barré syndrome and chronic inflammatory demyelinating polyradiculoneuropathy. Eur Neurol. 2016;75:199–206.
  • Albrecht GL, Devlieger PJ. The disability paradox: high quality of life against all odds. Soc Sci Med. 1999;48:977–988.
  • Wynia K, Middel B, van Dijk JP, et al. The impact of disabilities on quality of life in people with multiple sclerosis. Mult Scler. 2008;14:972–980.
  • Wada A, Kawakami M, Liu M, et al. Development of a new scale for dysphagia in patients with progressive neuromuscular diseases: the neuromuscular disease swallowing status scale (NdSSS). J Neurol. 2015;262:2225–2231.
  • Willig TN, Paulus J, Saintguily JL, et al. Swallowing problems in neuromuscular disorders. Arch Phys Med Rehabil. 1994;75:1175–1181.

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