A further Rasch study confirms that ALSFRS-R does not conform to fundamental measurement requirements

References

• Cedarbaum JM, Stambler N, Malta E, Fuller C, Hilt D, Thurmond B, et al. The ALSFRS-R: a revised ALS functional rating scale that incorporates assessments of respiratory function. BDNF ALS Study Group (Phase III). J Neurol Sci. 1999;169:13–21.
   PubMed Web of Science ®Google Scholar
• Kaufmann P, Levy G, Montes J, Buchsbaum R, Barsdorf AI, Battista V, et al. Excellent inter-rater, intra-rater, and telephone-administered reliability of the ALSFRS-R in a multicenter clinical trial. Amyotroph Lateral Scler. 2007; 8:42–6.
   Google Scholar
• Kasarskis EJ, Dempsey-Hall L, Thompson MM, Luu LC, Mendiondo M, Kryscio R. Rating the severity of ALS by caregivers over the telephone using the ALSFRS-R. Amyotroph Lateral Scler Other Motor Neuron Disord. 2005;6:50–4.
   PubMed Web of Science ®Google Scholar
• Miano B, Stoddard GJ, Davis S, Bromberg MB. Inter- evaluator reliability of the ALS functional rating scale. Amyotroph Lateral Scler Other Motor Neuron Disord. 2004;5:235–9.
   PubMed Web of Science ®Google Scholar
• Mannino M, Cellura E, Grimaldi G, Volanti P, Piccoli F, La Bella V. Telephone follow-up for patients with amyotrophic lateral sclerosis. Eur J Neurol. 2007;14:79–84.
   PubMed Web of Science ®Google Scholar
• Maier A, Holm T, Wicks P, Steinfurth L, Linke P, Münch C, et al. Online assessment of ALS functional rating scale compares well to in-clinic evaluation: a prospective trial. Amyotroph Lateral Scler. 2012;13:210–6.
   PubMed Web of Science ®Google Scholar
• The Amyotrophic Lateral Sclerosis Functional Rating Scale. Assessment of activities of daily living in patients with amyotrophic lateral sclerosis. The ALS CNTF treatment study (ACTS) phase I-II Study Group. Arch Neurol. 1996; 53:141–7.
   Google Scholar
• Kaufmann P, Levy G, Thompson JL, Delbene ML, Battista V, Gordon PH, et al. The ALSFRS-R predicts survival time in an ALS clinic population. Neurology. 2005;64:38–43.
   PubMed Web of Science ®Google Scholar
• A controlled trial of recombinant methionyl human BDNF in ALS: The BDNF Study Group (Phase III). Neurology. 1999;52:1427–33.
   PubMed Web of Science ®Google Scholar
• Groeneveld GJ, Veldink JH, van der Tweel I, Kalmijn S, Beijer C, de Visser M, et al. A randomized sequential trial of creatine in amyotrophic lateral sclerosis. Ann Neurol. 2003;53:437–45.
   PubMed Web of Science ®Google Scholar
• Cudkowicz ME, Shefner JM, Schoenfeld DA, Brown RH Jr, Johnson H, Qureshi M, et al. A randomized, placebo- controlled trial of topiramate in amyotrophic lateral sclerosis. Neurology. 2003;61:456–64.
   PubMed Web of Science ®Google Scholar
• Shefner JM, Cudkowicz ME, Schoenfeld D, Conrad T, Taft J, Chilton M, et al. Clinical trial of creatine in patients with amyotrophic lateral sclerosis. Amyotroph Lateral Scler Other Motor Neuron Disord. 2003;4(Suppl):28, C31.
   PubMedGoogle Scholar
• Chiò A, Canosa A, Gallo S, Cammarosano S, Moglia C, Fuda G, et al. ALS clinical trials: do enrolled patients accurately represent the ALS population? Neurology. 2011; 77:1432–7.
   PubMed Web of Science ®Google Scholar
• Wicks P, Massagli MP, Wolf C, Heywood J. Measuring function in advanced ALS: validation of ALSFRS-EX extension items. Eur J Neurol. 2009;16:353–9.
   PubMed Web of Science ®Google Scholar
• Gordon PH, Cheng B, Salachas F, Pradat PF, Bruneteau G, Corcia P, et al. Progression in ALS is not linear but is curvilinear. J Neurol. 2010;257:1713–7.
   PubMed Web of Science ®Google Scholar
• Franchignoni F, Mora G, Giordano A, Volanti P, Chiò A. Evidence of multidimensionality in the ALSFRS-R scale: a critical appraisal on its measurement properties using Rasch analysis. J Neurol Neurosurg Psychiatry. 2013;84:1340–5.
   PubMed Web of Science ®Google Scholar
• 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.
   PubMed Web of Science ®Google Scholar
• Kollewe K, Mauss U, Krampfl K, Petri S, Dengler R, Mohammadi B. ALSFRS-R score and its ratio: a useful predictor for ALS progression. J Neurol Sci. 2008;275:69–73.
   PubMed Web of Science ®Google Scholar
• Hu L, Bentler PM. Cut-off criteria for fit indexes in covariance structure analysis: conventional criteria versus new alternatives. Struct Equat Model. 1999;6:1–55.
   Web of Science ®Google Scholar
• Linacre JM. Optimizing rating scale category effectiveness. J Appl Meas. 2002;3:85–106.
   PubMedGoogle Scholar
• Wolfe EW, Smith EV Jr. Instrument development tools and activities for measure validation using Rasch models: part II – validation activities. J Appl Meas. 2007;8:204–23.
   PubMedGoogle Scholar
• Bond TG, Fox CM. Applying the Rasch model: fundamental measurement in the human sciences, 2nd edn. Mahwah, NJ: Lawrence Erlbaum Associates; 2007. pp 219–33.
   Google Scholar
• Stout W.A non-parametric approach for assessing latent trait unidimensionality. Psychometrika. 1987;52:589–617.
   Web of Science ®Google Scholar
• Pinto S, de Carvalho M. The R of ALSFRS-R: does it really mirror functional respiratory involvement in amyotrophic lateral sclerosis? Amyotroph Lateral Scler Frontotemporal Degener. 2014 Sep 10:1–4. [Epub ahead of print]
   Google Scholar
• Linacre JM. A user's guide to WINSTEPS-MINISTEP: Rasch-model computer programs. Program manual 3.75.0 [Internet] 2012 [cited 12/15/2014]; page 523. Available with full text from: http://www.winsteps.com/a/winsteps.pdf
   Google Scholar