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Research Papers

Exploring quality of life in people with slowly-progressive neuromuscular disease

ORCID Icon, , , , , , , & show all
Pages 1262-1270 | Received 26 Oct 2015, Accepted 16 May 2016, Published online: 24 Jun 2016

References

  • Carter GT, Weiss MD, Chamberlain JR, et al. Aging with muscular dystrophy: pathophysiology and clinical management. Phys Med Rehabil Clin N Am. 2010;21:429–450.
  • Idler EL, Russell LB, Davis D. Survival, functional limitations, and self-rated health in the NHANES I epidemiologic follow-up study, 1992. First national health and nutrition examination survey. Am J Epidemiol. 2000;152:874–883.
  • Bottomley A, Jones D, Claassens L. Patient-reported outcomes: assessment and current perspectives of the guidelines of the food and drug administration and the reflection paper of the European medicines agency. Eur J Cancer. 2009;45:347–353.
  • Speight J, Barendse SM. FDA guidance on patient reported outcomes A prompt for the industry to raise scientific standards. BMJ. 2010;340:c2921.
  • Boyer F, Novella JL, Bertaud S, et al. Hereditary neuromuscular disease and multicomposite subjective health status: feasibility, internal consistency and test-retest reliability in the French version of the Nottingham health profile, the ISPN. Clin Rehabil. 2005;19:644–653.
  • Boyer F, Morrone I, Laffont I, et al. Health related quality of life in people with hereditary neuromuscular diseases: an investigation of test-retest agreement with comparison between two generic questionnaires, the Nottingham health profile and the short form-36 items. Neuromuscul Disord. 2006;16:99–106.
  • 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.
  • Ahlström G, Gunnarsson LG. Disability and quality of life in individuals with muscular dystrophy. Scand J Rehabil Med. 1996;28:147–157.
  • Nätterlund B, Ahlstrom G. Activities of daily living and quality of life in persons with muscular dystrophy. J Rehab Med. 2001;33:206–211.
  • Vincent KA, Carr AJ, Walburn J, et al. Construction and validation of a quality of life questionnaire for neuromuscular disease (INQoL). Neurology. 2007;68:1051–1057.
  • Bos I, Kuks JB, 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.
  • Grimby G, Smedby B. ICF approved as the successor of ICIDH. J Rehabil Med. 2001;33:193–194.
  • Ramdharry GM, Thornhill A, Mein G, et al. Exploring the experience of fatigue in people with Charcot-Marie-tooth disease. Neuromuscul Disord. 2012;22:S208–S213.
  • Salminen AL, Kanelisto KJ, Karhula ME. What components of rehabilitation are helpful from the perspective of individuals with multiple sclerosis? Disabil Rehabil. 2014;36:1983–1989.
  • Dany A, Barbe C, Rapin A, et al. Construction of a Quality of Life Questionnaire for slowly progressive neuromuscular disease. Qual Life Res. 2015;24:2615–2623.
  • Morgan DL. The focus group guidebook. Ann Arbor, MI: SAGE; 1998.
  • Morgan DL, Krueger RA, King JA. Analyzing and reporting focus group results. Thousand Oaks, CA: SAGE Publications; 1998.
  • Morgan DL, Scannell AU. Planning focus groups. Ann Arbor, MI: SAGE Publications; 1998.
  • Weinberger M, Ferguson JA, Westmoreland G, et al. Can raters consistently evaluate the content of focus groups? Soc Sci Med. 1998;46:929–933.
  • Grbich C. Qualitative research in health: an introduction. London, UK: SAGE; 1999.
  • Reeve D. Negotiating psycho-emotional dimensions of disability and their influence on identity constructions. Disabil Soc. 2002;17:493–508.
  • 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.
  • Albrecht GL, Devlieger PJ. The disability paradox: high quality of life against all odds. Soc Sci Med. 1999;48:977–988.
  • Nätterlund B, Ahlström G. Experience of social support in rehabilitation: a phenomenological study. J Adv Nurs. 1999;30:1332–1340.
  • Tiffreau V, Viet G, Thévenon A. Pain and neuromuscular disease: the results of a survey. Am J Phys Med Rehabil. 2006;85:756–766.
  • Padua L, Aprile I, Frusciante R, et al. Quality of life and pain in patients with facioscapulohumeral muscular dystrophy. Muscle Nerve. 2009;40:200–205.
  • Bos I, Stallinga AH, Middel B, et al. Validation of the ICF core set for neuromuscular diseases. Eur J Phys Rehabil Med. 2013;49:179–187.
  • Timman R, Tibben A, Wintzen AR. Myotonic dystrophy: the burden for patients and their partners. J Rehabil Med. 2010;42:823–830.

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