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Research Article

From symptom onset to a diagnosis of amyotrophic lateral sclerosis/motor neuron disease (ALS/MND): Experiences of people with ALS/MND and family carers – a qualitative study

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Pages 97-104 | Received 04 Oct 2010, Accepted 05 Dec 2010, Published online: 05 Jan 2011

References

  • Goldstein LH, Leigh PN. Motor neuron disease: a review of its emotional and cognitive consequences for patients and its impact on carers. British Journal of Health Psychology. 1999;4:193–208.
  • Chio A. ISIS Survey: an international study on the diagnostic process and its implications in amyotrophic lateral sclerosis. J Neurol. 1999;246 (Suppl 3):1–5.
  • Chio A. Risk factors in the early diagnosis of ALS: European Epidemiological Studies. Amyotroph Lateral Scler Other Motor Neuron Disord. 2000;1:13–8.
  • Zoccalella S, Beghi E, Palagno G, Fraddosio A, Sommarelli V, Lamberti P, . Predictors of delay in diagnosis and clinical trial entry of amyotrophic lateral sclerosis patients. A population based study. J Neurol Sci. 2006;250: 45–9.
  • Donaghy C, Dick A, Hardiman O, Patterson V. Timeliness of diagnosis in motor neuron disease: a population based study. Ulster Med J. 2008;77:18–21.
  • Shook S, Pioro E. Racing against the clock: recognizing, differentiating and referring the ALS patient. Ann Neurol. 2009;65:S10–6.
  • Kraemer M, Bueger M, Belit P. Diagnostic problems and delay in amyotrophic lateral sclerosis. Clin Neurol Neurosurg. 2010;112:103–5.
  • Gelinas D. Effects of the early diagnosis of amyotrophic lateral sclerosis on the patient: advantages. Amyotroph Lateral Scler. 2000;1:S73–4.
  • Househam E, Swash M. Diagnostic delay in amyotrophic lateral sclerosis: what scope for improvement? J Neurol Sci. 2000;180:76–81.
  • Andersen PM, Borasio GD, Dengler R. EFNS Task Force on diagnosis and management of amyotrophic lateral sclerosis: guidelines for diagnosing and clinical care of patients and relatives. European Journal of Neurology. 2005;12:921–38.
  • Andersen P, Borasio G, Dengler R, Hardiman O, Kollewe K, Leigh P, . Good practice in management of amyotrophic lateral sclerosis: clinical guidelines. An evidence based review with good practice points. EALSC Working Group. 2007;8:195–213.
  • McDermott C, Shaw P. Diagnosis and management of motor neuron disease. Br Med J. 2008;336:658–62.
  • Borasio GD, Sloan R, Pongratz D. Breaking the news in amyotrophic lateral sclerosis. J Neurol Sci. 1998;160: S127–33.
  • Chio A, Borasio GD. Breaking the news in amyotrophic lateral sclerosis. Amyotroph Lateral Scler Other Motor Neuron Disord. 2004;5:195–201.
  • Chio A, Montuschi A, Cammarosano S, de Mercanti S, Cavallo E, Ilardi A, . ALS patients and caregivers communication preferences and information seeking behaviour. European Journal of Neurology. 2008;15:55–60.
  • McCluskey L, Casarett D, Siderowf A. Breaking the news: a survey of ALS patients and their caregivers. Amyotroph Lateral Scler Other Motor Neuron Disord. 2004;5: 131–5.
  • Johnston M, Earll L, Mitchell E, Morrison V, Wright S. Communicating the diagnosis of motor neuron disease. Palliat Med. 1996;10:23–34.
  • MND Association. The Impact of Familial Motor Neuron Disease. Information Sheet, No. P2. 2007. http://tinyurl.com/m2uhv4 (accessed 18 December 2009).
  • MNDA(2010)http://www.mndassociation.org/life_with_mnd/experiences_of_mnd/index.html. [accessed 24.05.10]
  • Miller RG, Rosenberg JA, Gelinas DF, Mitsumoto H, Newman D, Sufit R. Practice Parameter: the care of the patient with amyotrophic lateral sclerosis (an evidence based review): report of the Quality Standards Subcommittee of the American Academy of Neurology: ALS Practice Parameters Task Force. Neurology. 1999;52:1311–23.
  • Hardiman O, Traynor BJ, Corr B, Frost E. Models of care for motor neuron disease: setting standards. Amyotroph Lateral Scler Other Motor Neuron Disord. 2002;3:182–5.
  • Hugel H, Grundy N, Rigby S, Young CA. How does current care practice influence the experience of a new diagnosis of motor neuron disease? A qualitative study of current guidelines-based practice. Amyotroph Lateral Scler. 2006;7: 161–6.
  • Ganzini L, Johnston WS, Hoffman WF. Correlates of suffering in amyotrophic lateral sclerosis. Neurology. 1999;52: 1434.
  • Hugel H, Pih N, Dougan CP, Rigby S, Young CA. Identifying poor adaptation to a new diagnosis of motor neuron disease. A pilot study into the value of an early patient-led interview. Amyotroph Lateral Scler. 2010;11:104–9.
  • Polit DF, Beck CT. Essentials of nursing research: appraising methods for nursing practice. 7th . Philadelphia: Lippincott.
  • Overcash J. Narrative research: a review of methodology and relevance to clinical practice. Critical Reviews in Oncology/Haematology. 2003;48:179–84.
  • Attride-Sterling J. Thematic networks: an analytic tool for qualitative research. Qualitative Research. 2001;1: 385–405.
  • Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Research in Psychology. 2006;3:77–101.
  • Pope C, Mays N. Qualitative research: reaching the parts other methods cannot reach. An introduction to qualitative methods in health and health services research. Br Med J. 1995;311:42–5.
  • Mays N, Pope C. Education and debate: qualitative research. Rigour and qualitative research. Br Med J. 1995;311: 109–12.
  • Davies Z, Turner M. Public awareness of motor neuron disease (Letter to the Editor) Amyotroph Lateral Scler. 2010;11:490–1.
  • Mitchell JD, Callagher P, Gardham J, Mitchell C, Dixon M, Addison-Jones R, . Timelines in the diagnostic evaluation of people with suspected amyotrophic lateral sclerosis (ALS)/motor neuron disease (MND) – a 20-year review: Can we do better? ALS. 2010;11537–41.
  • Callagher P, Mitchell JD, Bennett W, Addison-Jones R. Evaluating a fast-track service for diagnosing MND/ALS against traditional pathways. British Journal of Neuroscience Nursing. 2009;5:322–5.
  • Beaver K, Luker K, Woods S. Conducting research with the terminally ill: challenges and considerations. International Journal of Palliative Nursing. 1999;5:13–7.
  • Herz H, McKinnon M, Butow P. Proof of love and other themes: a qualitative exploration of the experience of caring for people with motor neuron disease. Progress in Palliative Care. 2006;14:209–14.

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