Evidence map›Paper›PMID 38426231›Full record

ArticleAmyotrophic lateral sclerosis & frontotemporal degeneration2024

Improving the measurement properties of the Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R): deriving a valid measurement total for the calculation of change.

Carolyn A Young, Amina Chaouch, Christopher J Mcdermott, Ammar Al-Chalabi, Suresh K Chhetri, Kevin Talbot, Andrea Malaspina, Roger Mills, Alan Tennant

Open access · hybridAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Amyotrophic lateral sclerosis & frontotemporal degeneration, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed, 1 pooled it
4.4field-weighted citation impact, top 5% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

5 citing papers in PubMed, 1 synthesis or guideline pooled it, 12 citations in OpenAlex.

  1. Pooled it
  2. Review
  3. Article
  4. Determinants and progression of stigma in amyotrophic lateral sclerosis/motor neuron disease.Amyotrophic lateral sclerosis & frontotemporal degeneration · 2025
    Article
  5. Estimating the minimum important difference in the ALSFRS-R-instrument in people living with MND.Amyotrophic lateral sclerosis & frontotemporal degeneration · 2025
    Observational
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

9 authors at 8 institutions in 1 country.

Carolyn A YoungWalton Centre NHS Foundation Trust, Liverpool, UK.ORCID 0000-0003-1745-7720
Amina ChaouchGreater Manchester Centre for Clinical Neurosciences, Salford, UK.
Christopher J McdermottSheffield Institute for Translational Neuroscience, Sheffield, UK.ORCID 0000-0002-1269-9053
Ammar Al-ChalabiMaurice Wohl Clinical Neuroscience Institute, Department of Basic and Clinical Neuroscience, King's College London, London, UK.
Suresh K ChhetriLancashire Teaching Hospital, Preston, UK.
Kevin TalbotNuffield Department of Clinical Neurosciences, University of Oxford, Oxford, UK.
Andrea MalaspinaUCL Queen Square Institute of Neurology, London, UK, and.
Roger MillsWalton Centre NHS Foundation Trust, Liverpool, UK.
Alan TennantLeeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds, UK.
University of Liverpool · GBGreater Manchester STEM Centre · GBKing's College London · GBLancashire Teaching Hospitals NHS Foundation Trust · GBNational Hospital for Neurology and Neurosurgery · GBUniversity of Leeds · GBUniversity of Oxford · GBUniversity of Sheffield · GB

Funding

Motor Neurone Disease Association MALASPINA/APR13/817-791Motor Neurone Disease Association TURNER/OCT15/972-797
6 · The paper itself

Abstract

backgroundThe Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) total score is a widely used measure of functional status in Amyotrophic Lateral Sclerosis/Motor Neuron Disease (ALS), but recent evidence has raised doubts about its validity. The objective was to examine the measurement properties of the ALSFRS-R, aiming to produce valid measurement from all 12 scale items.

methodLongitudinal ALSFRS-R data were collected between 2013-2020 from 1120 people with ALS recruited from 35 centers, together with other scales in the Trajectories of Outcomes in Neurological Conditions-ALS (TONiC-ALS) study. The ALSFRS-R was analyzed by confirmatory factor analysis (CFA), Rasch Analysis (RA) and Mokken scaling.

resultsNo definite factor structure of the ALSFRS-R was confirmed by CFA. RA revealed the raw score total to be invalid even at the ordinal level because of multidimensionality; valid interval level subscale measures could be found for the Bulbar, Fine-Motor and Gross-Motor domains but the Respiratory domain was only valid at an ordinal level. All four domains resolved into a single valid, interval level measure by using a bifactor RA. The smallest detectable difference was 10.4% of the range of the interval scale.

conclusionA total ALSFRS-R ordinal raw score can lead to inferential bias in clinical trial results due to its non-linear nature. On the interval level transformation, more than 5 points difference is required before a statistically significant detectable difference can be observed. Transformation to interval level data should be mandatory in clinical trials.

Indexed as

Amyotrophic Lateral SclerosisDisease ProgressionFactor Analysis, StatisticalHumansAmyotrophic Lateral Sclerosis Functional Rating Scale-Revised, Trajectories of Outcome in Neurological Conditions-ALS, Raschoutcome measurement, disability

Identifiers

PMID38426231
PMCPMC11262430
OpenAlexW4392365971

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.