Online citations, reference lists, and bibliographies.
← Back to Search

A Further Rasch Study Confirms That ALSFRS-R Does Not Conform To Fundamental Measurement Requirements

F. Franchignoni, J. Mandrioli, A. Giordano, S. Ferro
Published 2015 · Psychology, Medicine

Save to my Library
Download PDF
Analyze on Scholarcy Visualize in Litmaps
Reduce the time it takes to create your bibliography by a factor of 10 by using the world’s favourite reference manager
Time to take this seriously.
Get Citationsy
Our objective was to verify and expand previous evidence of psychometric inadequacies in the ALSFRS-R, in a different sample of subjects suffering from ALS. Since 2009, a prospective registry records all incident cases of ALS in Emilia Romagna Region, Italy (4.4 million inhabitants) referred to its 17 neurological departments. For each patient, demographic and clinical information is collected by the physician in charge, including compilation of the ALSFRS-R at each clinical follow-up. Results showed that a confirmatory factor analysis on the three-factor model previously found (bulbar, motor, respiratory function) showed a good fit. Rasch analysis on the whole scale showed the need to collapse some rating categories, confirmed the multidimensionality of the ALSFRS-R, and demonstrated the presence of differential item functioning between patients with spinal versus bulbar onset. Moreover, some items included in the three ALSFRS-R subscales showed a problematic fit to the respective construct they were intended to measure. In conclusion, the interpretation of a total raw score of ALSFRS-R is hampered by ambiguities due to the different metric properties of the three domains the scale aggregates, and their content and structure. This study confirms that a refinement of ALSFRS-R is warranted, pointing to the need to revise its whole structure, and providing detailed guidelines for its revision.
This paper references
A nonparametric approach for assessing latent trait unidimensionality
W. Stout (1987)
A non-parametric approach for assessing latent trait 23. unidimensionality
W Stout (1987)
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.
Cutoff criteria for fit indexes in covariance structure analysis : Conventional criteria versus new alternatives
Li-tze Hu (1999)
The ALSFRS-R: a revised ALS functional rating scale that incorporates assessments of respiratory function
J. Cedarbaum (1999)
A controlled trial of recombinant methionyl human BDNF in ALS
W. Bradley (1999)
A controlled trial of recombinant methionyl human BDNF 9
The BDNF Study Group(Phase III). Neurology
GJ Groeneveld (1999)
Applying the Rasch Model: Fundamental Measurement in the Human Sciences
T. Bond (2001)
Optimizing rating scale category effectiveness.
J. Linacre (2002)
A randomized, placebo-controlled trial of topiramate in amyotrophic lateral sclerosis
M. Cudkowicz (2003)
Nocturnal pulse oximetry: a new approach to establish the appropriate time for non‐invasive ventilation in ALS patients
A. Pinto (2003)
A randomized sequential trial of creatine in amyotrophic lateral sclerosis
Geert Jan Groeneveld (2003)
ALS clinical trials: do enrolled patients accurately represent the ALS population?
J M Shefner (2003)
A randomized, placebocontrolled trial of topiramate in amyotrophic lateral sclerosis
H Johnson (2003)
Clinical trial of creatine in patients with amyotrophic lateral sclerosis
J Taft (2003)
Inter-evaluator reliability of the ALS Functional Rating Scale
B. Miano (2004)
evaluator reliability of the ALS functional rating scale. Amyotroph Lateral Scler Other Motor Neuron Disord
M Mannino (2004)
Rating the severity of ALS by caregivers over the telephone using the ALSFRS‐R
E. Kasarskis (2005)
The ALSFRSr predicts survival time in an ALS clinic population
P. Kaufmann (2005)
Excellent inter‐rater, intra‐rater, and telephone‐administered reliability of the ALSFRS‐R in a multicenter clinical trial
P. Kaufmann (2007)
Instrument development tools and activities for measure validation using Rasch models: part II--validation activities.
E. Wolfe (2007)
Telephone follow‐up for patients with amyotrophic lateral sclerosis
M. Mannino (2007)
La Bella V. Telephone follow-up for patients with amyotrophic lateral sclerosis
M Mannino (2007)
A non-parametric approach for assessing latent trait
W. Stout (2007)
ALSFRS-R score and its ratio: A useful predictor for ALS-progression
K. Kollewe (2008)
Measuring function in advanced ALS: validation of ALSFRS‐EX extension items
P. Wicks (2009)
Progression in ALS is not linear but is curvilinear
P. Gordon (2010)
ALS clinical trials
A. Chiò (2011)
Online assessment of ALS functional rating scale compares well to in-clinic evaluation: A prospective trial
A. Maier (2012)
Evidence of multidimensionality in the ALSFRS-R Scale: a critical appraisal on its measurement properties using Rasch analysis
F. Franchignoni (2013)
Epidemiology of amyotrophic lateral sclerosis in Emilia Romagna Region (Italy): A population based study
J. Mandrioli (2014)
The R of ALSFRS-R: Does it really mirror functional respiratory involvement in amyotrophic lateral sclerosis?
S. Pinto (2015)
Amyotrophic Lateral Sclerosis Functional Rating Scale
Michelle Marie Tipton-Burton (2017)
A user's guide to WINSTEPS-MINISTEP: 25. Rasch-model computer programs
J M Linacre
The R of ALSFRS-R: does it really 24. mirror functional respiratory involvement in amyotrophic lateral sclerosis? Amyotroph Lateral Scler Frontotemporal Degener
S Pinto
Department of Clinical and Experimental Medicine, Respiratory Disease and Lung Function Unit
A Grassi
Department of Neurology and IRCCS Istituto delle Scienze Neurologiche di Bologna, Maggiore Hospital
Imola Department Of Neurology

This paper is referenced by
Do Generic Preference-Based Measures Accurately Capture Areas of Health-Related Quality of Life Important to Individuals with Amyotrophic Lateral Sclerosis: A Content Validation Study
N. Peters (2021)
An old friend who has overstayed their welcome: the ALSFRS-R total score as primary endpoint for ALS clinical trials
R. V. van Eijk (2021)
Chinese validation of the Rasch‐Built Overall Amyotrophic Lateral Sclerosis Disability Scale
Can Sun (2021)
Diagnostic utility of the amyotrophic lateral sclerosis Functional Rating Scale—Revised to detect pharyngeal dysphagia in individuals with amyotrophic lateral sclerosis
J. Chapin (2020)
Microendoscopy detects altered muscular contractile dynamics in a mouse model of amyotrophic lateral sclerosis
X. Chen (2020)
The C 9 orf 72 expansion is associated with accelerated respiratory function decline in a large Amyotrophic Lateral Sclerosis cohort [ version 1 ; peer review : awaiting peer review ]
McLaughlin (2019)
Development and assessment of the inter-rater and intra-rater reproducibility of a self-administration version of the ALSFRS-R
Leonhard A Bakker (2019)
The C9orf72 expansion is associated with accelerated respiratory function decline in a large Amyotrophic Lateral Sclerosis cohort
J. Rooney (2019)
Regional spreading of symptoms at diagnosis as a prognostic marker in amyotrophic lateral sclerosis: a population-based study
U. Manera (2019)
Development and Validation of the Rasch-Built Overall Amyotrophic Lateral Sclerosis Disability Scale (ROADS).
Christina N. Fournier (2019)
Stay at home with the amyotrophic lateral sclerosis functional rating scale
Christopher Mcdermott (2019)
Longitudinal analysis of sniff nasal inspiratory pressure assessed using occluded and un-occluded measurement techniques in amyotrophic lateral sclerosis and primary lateral sclerosis
D. Murray (2019)
The Environmental Epidemiology of Amyotrophic Lateral Sclerosis in Europe
J. Rooney (2018)
Association Between Decline in Slow Vital Capacity and Respiratory Insufficiency, Use of Assisted Ventilation, Tracheostomy, or Death in Patients With Amyotrophic Lateral Sclerosis
J. Andrews (2018)
Assessment of bulbar function in amyotrophic lateral sclerosis: validation of a self‐report scale (Center for Neurologic Study Bulbar Function Scale)
R. Smith (2018)
Riluzole and other prognostic factors in ALS: a population-based registry study in Italy
J. Mandrioli (2018)
Unraveling the Complexity of Amyotrophic Lateral Sclerosis Survival Prediction
Stephen R. Pfohl (2018)
Clinimetrics: Amyotrophic Lateral Sclerosis Functional Rating Scale-revised (ALSFRS-R).
Michael Lee (2018)
Assessment of the factorial validity and reliability of the ALSFRS-R: a revision of its measurement model
Leonhard A Bakker (2017)
Memory-related white matter tract integrity in amyotrophic lateral sclerosis: an advanced neuroimaging and neuropsychological study
F. Christidi (2017)
Measuring what matters to rare disease patients – reflections on the work by the IRDiRC taskforce on patient-centered outcome measures
T. Morel (2017)
Defining disease progression in ALS : a novel analytic approach using existing clinical and imaging datasets
M. Gabel (2017)
Psychometric properties of upper extremity outcome measures validated by Rasch analysis: a systematic review
I. Hong (2017)
Cassie S. Mitchell (2017)
Item response theory analysis of the Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised in the Pooled Resource Open-Access ALS Clinical Trials Database
E. Bacci (2016)
Increased Expressions of Plasma Galectin-3 in Patients with Amyotrophic Lateral Sclerosis
Jun Yan (2016)
Afinal que diferença clínica tem significado no tratamento farmacológico da esclerose lateral amiotrófica? : contributo dos ensaios clínicos e análise dos endpoints de eficácia
Filipa Alexandra Bitoque Rodrigues Taborda (2016)
Amyotrophic lateral sclerosis: a comparison of two staging systems in a population‐based study
D. Ferraro (2016)
What does the ALSFRS-R really measure? A longitudinal and survival analysis of functional dimension subscores in amyotrophic lateral sclerosis
J. Rooney (2016)
Optimizing quality of care for patients with ALS and their family caregivers
H. Creemers (2016)
The Åstrand-Ryhming Test is not a Feasible Measure in Ambulatory Patients with Amyotrophic Lateral Sclerosis.
A. V. van Groenestijn (2016)
The ALSFRS as an outcome measure in therapeutic trials and its relationship to symptom onset
M. Proudfoot (2016)
See more
Semantic Scholar Logo Some data provided by SemanticScholar