Cited by 111Amyotrophic Lateral Sclerosis ResearchDementia and Cognitive Impairment ResearchHistorical and Modern Theater Studies

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The ALS-FTD-Q: A new screening tool for behavioral disturbances in ALS

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Raaphorst, Joost, Beeldman, Emma, Schmand, Ben, Berkhout, Joris, Linssen, Wim H.J.P., van den Berg, Leonard H., Pijnenburg, Yolande A., Grupstra, Hepke F., Weikamp, Janneke G., Schelhaas, H. Jurgen, Papma, Janne M., van Swieten, John C., de Visser, Marianne, de Haan, Rob J.·2012·Neurology

DOI 10.1212/wnl.0b013e31826c1aa1

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Abstract

OBJECTIVE: The assessment of behavioral disturbances in amyotrophic lateral sclerosis (ALS) is important because of the overlap with the behavioral variant of frontotemporal dementia (ALS-bvFTD). Motor symptoms and dysarthria are not taken into account in currently used behavioral questionnaires. We examined the clinimetric properties of a new behavioral questionnaire for patients with ALS (Amyotrophic Lateral Sclerosis-Frontotemporal Dementia-Questionnaire [ALS-FTD-Q]). METHODS: In addition to other clinimetric properties, we examined reliability, clinical validity, and construct validity of the ALS-FTD-Q, using data from patients with ALS (n = 103), ALS-bvFTD (n = 10), bvFTD (n = 25), muscle disease control subjects (n = 39), and control subjects (n = 31). Construct validity of the ALS-FTD-Q was assessed using the Frontal Systems Behavior scale (FrSBe), Frontal Behavioral Inventory (FBI), Hospital Anxiety and Depression Scale, ALS Functional Rating Scale-Revised, Frontal Assessment Battery, Mini-Mental State Examination, and a fluency index. In addition, the point prevalence of behavioral disturbances according to the ALS-FTD-Q was compared with those obtained with the FrSBe and FBI. RESULTS: The internal consistency of the ALS-FTD-Q was good (Cronbach α = 0.92). The ALS-FTD-Q showed construct validity because it correlated highly with other behavioral measures (r = 0.80 and 0.79), moderately with measures of frontal functions and global cognitive functioning (r = 0.37; r = 0.32), and poorly with anxiety/depression and motor impairment (r = 0.18 for both). The ALS-FTD-Q discriminated between patients with ALS-bvFTD, patients with ALS, and control subjects. The point prevalence of behavioral disturbances in patients with ALS measured with the ALS-FTD-Q was lower than that for the FrSBe and FBI. CONCLUSION: The ALS-FTD-Q is a feasible and clinimetrically validated instrument for the screening of behavioral disturbances in ALS.

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Authors: Raaphorst, J., Beeldman, E., Schmand, B., Berkhout, J., Linssen, W. H. J. P., van den Berg, L. H., Pijnenburg, Y. A., Grupstra, H. F., Weikamp, J. G., Schelhaas, H. J., Papma, J. M., van Swieten, J. C., de Visser, M., & de Haan, R. J.
Affiliations: Radboud University Nijmegen (NL)
From the Department of Neurology (J.R., E.B., B.S., J.B., M.d.V.), Rehabilitation Medicine (H.F.G.) and Clinical Research Unit (R.J.d.H.), Academic Medical Centre, University of Amsterdam, Amsterdam; Department of Psychology (B.S.), University of Amsterdam, Amsterdam; Department of Neurology (W.H.J.P.L.), Sint Lucas Andreas Hospital, Amsterdam; Department of Neurology (L.H.v.d.B.), Rudolf Magnus Institute, University Medical Center, Utrecht; Department of Neurology (Y.A.P.), Alzheimer Centre VU...
ORCID: Raaphorst, Joost
Beeldman, Emma
Schmand, Ben
Berkhout, Joris
Pijnenburg, Yolande A.
Weikamp, Janneke G.
Venue: Neurology
Publisher: Ovid Technologies (Wolters Kluwer Health)
Published: 2012-09-25
Volume: 79
Issue: 13
Pages: 1377-1383
ISSN: 0028-3878 (ISSN-L)
1526-632X
DOI: 10.1212/wnl.0b013e31826c1aa1
OpenAlex: W2162851271
Cited by: 111
References: 38
Citations by year: 2026: 4 · 2025: 7 · 2024: 9 · 2023: 4 · 2022: 10 · 2021: 6 · 2020: 12 · 2019: 9 · 2018: 7 · 2017: 8 · 2016: 12 · 2015: 10 · 2014: 6 · 2013: 5 · 2012: 2
FWCI: 4.81
Type: journal article
Language: en
Open access: bronze
doi.org
Locations: Neurology (publishedVersion)
PubMed (publishedVersion)
UvA-DARE (University of Amsterdam) (publishedVersion)
Amsterdam UMC (VU Amsterdam) - Institutional Repository (publishedVersion, other-oa)
EUR Research Repository (Erasmus University Rotterdam) (publishedVersion)
VU Research Portal (publishedVersion, other-oa)
Pure Amsterdam UMC (submittedVersion, other-oa)
Data Archiving and Networked Services (DANS) (submittedVersion)
EUR Research Repository (Erasmus University Rotterdam) (submittedVersion)
UvA-DARE (University of Amsterdam) (submittedVersion)
Radboud Repository (Radboud University) (submittedVersion)
Data Archiving and Networked Services (DANS) (submittedVersion, other-oa)
Topics: Health Sciences › Medicine › Clinical Neurology › Amyotrophic Lateral Sclerosis Research
Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
Social Sciences › Psychology › Clinical Psychology › Historical and Modern Theater Studies
Keywords: amyotrophic lateral sclerosis, behavioral variant frontotemporal dementia, behavioral problems, clinimetric validation, construct validity, reliability statistics, screening tool, Frontal Systems Behavior Scale, Frontal Behavioral Inventory, point prevalence
MeSH terms: Aged, Amyotrophic Lateral Sclerosis, Female, Humans, Male, Middle Aged, Muscular Diseases, Neuropsychological Tests, Psychometrics, Surveys and Questionnaires, Frontotemporal Dementia

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The ALS-FTD-Q: A new screening tool for behavioral disturbances in ALS

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