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Original Article

Predictors of diagnostic delay in amyotrophic lateral sclerosis: a cohort study based on administrative and electronic medical records data

ORCID Icon, ORCID Icon, ORCID Icon & ORCID Icon
Pages 176-185 | Received 01 Aug 2018, Accepted 09 Nov 2018, Published online: 18 Jan 2019

References

  • Belsh JM, Schiffman PL. The amyotrophic lateral sclerosis (ALS) patient perspective on misdiagnosis and its repercussions. J Neurol Sci. 1996;139: 110–6.
  • Iwasaki Y, Ikeda K, Kinoshita M. The diagnostic pathway in amyotrophic lateral sclerosis. Amyotroph Lateral Scler Other Motor Neuron Disord. 2001;2:123–6.
  • Westeneng HJ, Debray TPA, Visser AE, van Eijk RPA, Rooney JPK, Calvo A, et al. Prognosis for patients with amyotrophic lateral sclerosis: development and validation of a personalised prediction model. Lancet Neurol. 2018;17:423–33.
  • Nzwalo H, de Abreu D, Swash M, Pinto S, de Carvalho M. Delayed diagnosis in ALS: the problem continues. J Neurol Sci. 2014;343:173–5.
  • Househam E, Swash M. Diagnostic delay in amyotrophic lateral sclerosis: what scope for improvement? J Neurol Sci. 2000;180:76–81.
  • Cellura E, Spataro R, Taiello AC, La Bella V. Factors affecting the diagnostic delay in amyotrophic lateral sclerosis. Clin Neurol Neurosurg. 2012;114:550–4.
  • Geevasinga N, Loy CT, Menon P, de Carvalho M, Swash M, Schrooten M, et al. Awaji criteria improves the diagnostic sensitivity in amyotrophic lateral sclerosis: a systematic review using individual patient data. Clin Neurophysiol. 2016;127:2684–91.
  • Ghasemi M. Amyotrophic lateral sclerosis mimic syndromes. Iran J Neurol. 2016;15:85–91.
  • Chiò A. ISIS Survey: an international study on the diagnostic process and its implications in amyotrophic lateral sclerosis. J Neurol. 1999;246: III1–5.
  • Kraemer M, Buerger M, Berlit P. Diagnostic problems and delay of diagnosis in amyotrophic lateral sclerosis. Clin Neurol Neurosurg. 2010;112:103–5.
  • Galvin M, Ryan P, Maguire S, Heverin M, Madden C, Vajda A, et al. The path to specialist multidisciplinary care in amyotrophic lateral sclerosis: a population-based study of consultations, interventions and costs. PLoS One. 2017;12:e0179796.
  • Marin B, Boumédiene F, Logroscino G, Couratier P, Babron MC, Leutenegger AL, et al. Variation in worldwide incidence of amyotrophic lateral sclerosis: a meta-analysis. Int J Epidemiol. 2017;46:57–74.
  • Paganoni S, Macklin EA, Lee A, Murphy A, Chang J, Zipf A, et al. Diagnostic timelines and delays in diagnosing amyotrophic lateral sclerosis (ALS). Amyotroph Lateral Scler Frontotemporal Degener. 2014;15:453–6.
  • Pinto S, Swash M, de Carvalho M. Does surgery accelerate progression of amyotrophic lateral sclerosis? J Neurol Neurosurg Psychiatry. 2014;85:643–6.
  • Riviere M, Meininger V, Zeisser P, Munsat T. An analysis of extended survival in patients with amyotrophic lateral sclerosis treated with riluzole. Arch Neurol. 1998;55:526–8.
  • Writing G. and for the Edaravone (MCI-186) ALS 19 study group. Safety and efficacy of edaravone in well-defined patients with amyotrophic lateral sclerosis: a randomised, double-blind, placebo-controlled trial. Lancet Neurol. 2017;16:505–12.
  • Abe K, Itoyama Y, Sobue G, Tsuji S, Aoki M, Doyu M, et al. Confirmatory double-blind, parallel-group, placebo-controlled study of efficacy and safety of edaravone (MCI-186) in amyotrophic lateral sclerosis patients. Amyotroph Lateral Scler Frontotemporal Degener. 2014;15:610–7.
  • Oh KW, Moon C, Kim HY, Oh SI, Park J, Lee JH, et al. Phase I trial of repeated intrathecal autologous bone marrow-derived mesenchymal stromal cells in amyotrophic lateral sclerosis. Stem Cells. 2015;4:590–7.
  • Hamidou B, Marin B, Lautrette G, Nicol M, Camu W, Corcia P, et al. Exploring the diagnosis delay and ALS functional impairment at diagnosis as relevant criteria for clinical trial enrolment. Amyotroph Lateral Scler Frontotemporal Degener. 2017;18:519–27.
  • Zoccolella S, Beghi E, Palagano G, Fraddosio A, Samarelli V, Lamberti P, et al. Signs and symptoms at diagnosis of amyotrophic lateral sclerosis: a population-based study in southern Italy. Eur J Neurol. 2006;13:789–92.
  • ISTAT. Available at: http://demo.istat.it/pop2014/index.html. Accessed April 20, 2018.
  • Palese F, Sartori A, Verriello L, Ros S, Passadore P, Manganotti P, et al. Epidemiology of amyotrophic lateral sclerosis in Friuli-Venezia Giulia, north-eastern Italy, 2002–2014: a retrospective population based study. Amyotroph Lateral Scler Frontotemporal Degener. 2018;19:1–10.
  • Rothman K, Greenland S, eds. Modern epidemiology. 2nd ed. Philadelphia, PA: Lippincott Williams & Wilkins; 1998:205–207.
  • http://www.who.int/news-room/fact-sheets/detail/ageing-and-health. Accessed September 26, 2018.
  • Belsh JM, Schiffman PL. Misdiagnosis in patients with amyotrophic lateral sclerosis. Arch Intern Med. 1990;150:2301–5.
  • Traynor BJ, Codd MB, Corr B, Forde C, Frost E, Hardiman O. Amyotrophic lateral sclerosis mimic syndromes: a population-based study. Arch Neurol. 2000;57:109–13.
  • Donaghy C, Dick A, Hardiman O, Patterson V. Timeliness of diagnosis in motor neurone disease: a population-based study. Ulster Med J. 2008;77:18–21.
  • Khishchenko N, Allen KD, Coffman CJ, Kasarskis EJ, Lindquist JH, Morgenlander JC, et al. Time to diagnosis in the national registry of veterans with amyotrophic lateral sclerosis. Amyotroph Lateral Scler. 2010;11:125–32.
  • Mitchell JD, Callagher P, Gardham J, Mitchell C, Dixon M, Addison-Jones R, et al. 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? Amyotroph Lateral Scler. 2010;11:537–41.
  • Williams TL. Motor neurone disease: diagnostic pitfalls. Clin Med (Lond). 2013;13:97–100.
  • Bakola E, Kokotis P, Zambelis T, Karandreas N. Inappropriate surgeries in amyotrophic lateral sclerosis: a still considerable issue. Amyotroph Lateral Scler Frontotemporal Degener. 2014;15:315–7.
  • Jordan H, Fagliano J, Rechtman L, Lefkowitz D, Kaye W. Population-based surveillance of amyotrophic lateral sclerosis in New Jersey, 2009–2011. Neuroepidemiology. 2014;43:49–56.
  • Vázquez-Costa JF, Martínez-Molina M, Fernández-Polo M, Fornés-Ferrer V, Frasquet-Carrera M, Sevilla-Mantecón T. Analysis of the diagnostic pathway and delay in patients with amyotrophic lateral sclerosis in the Valencian community. Neurologia. 2018;pii: S0213–4853(18):30157–9.
  • Gordon PH. Amyotrophic lateral sclerosis: an update for 2013 clinical features, pathophysiology, management and therapeutic trials. Aging Dis. 2013;04:295–310.
  • Ragonese P, Cellura E, Aridon P, D’amelio M, Spataro R, Taiello AC, et al. Incidence of amyotrophic lateral sclerosis in Sicily: a population based study. Amyotroph Lateral Scler. 2012;13:284–7.
  • Pugliatti M, Parish LD, Cossu P, Leoni S, Ticca A, Saddi MV, et al. Amyotrophic lateral sclerosis in Sardinia, insular Italy, 1995–2009. J Neurol. 2013;260:572–9.
  • Logroscino G, Beghi E, Zoccolella S, Palagano R, Fraddosio A, Simone IL, et al. SLAP registry. Incidence of amyotrophic lateral sclerosis in southern Italy: a population based study. J Neurol Neurosurg Psychiatry. 2005;76:1094–8.
  • Scialò C, Novi G, Bandettini di Poggio M, Canosa A, Sormani MP, Mandich P, et al. Clinical epidemiology of amyotrophic lateral sclerosis in Liguria, Italy: an update of LIGALS register. Amyotroph Lateral Scler Frontotemporal Degener. 2016;17:535–42.
  • Mandrioli J, Biguzzi S, Guidi C, Venturini E, Sette E, Terlizzi E, et al. Epidemiology of amyotrophic lateral sclerosis in Emilia-Romagna Region (Italy): a population based study. Amyotroph Lateral Scler Frontotemporal Degener. 2014;15:262–8.
  • http://www.quotidianosanita.it/studi-e-analisi/articolo.php?articolo_id=57941. Accessed April 20, 2018.
  • Vu LT, Bowser R. Fluid-based biomarkers for amyotrophic lateral sclerosis. Neurotherapeutics. 2017;14:119–34.
  • Cristini J. Misdiagnosis and missed diagnoses in patients with ALS. JAAPA. 2006;19:29–35.
  • Srinivasan J, Scala S, Jones HR, Saleh F, Russell JA. Inappropriate surgeries resulting from misdiagnosis of early amyotrophic lateral sclerosis. Muscle Nerve. 2006;34:359–60.
  • https://www.gponline.com/clinical-review-motor-neurone-disease/neurology/article 1328434. Accessed September 26, 2018.

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