Protocol for psychometric evaluation of the Amyotrophic Lateral Sclerosis - Bulbar Dysfunction Index (ALS-BDI): a prospective longitudinal study.
motor neurone disease
neuromuscular disease
rehabilitation medicine
Journal
BMJ open
ISSN: 2044-6055
Titre abrégé: BMJ Open
Pays: England
ID NLM: 101552874
Informations de publication
Date de publication:
08 03 2022
08 03 2022
Historique:
entrez:
9
3
2022
pubmed:
10
3
2022
medline:
28
4
2022
Statut:
epublish
Résumé
Early detection and tracking of bulbar dysfunction in amyotrophic lateral sclerosis (ALS) are critical for directing management of the disease. Current clinical bulbar assessment tools are lacking, while existing physiological instrumental assessments are often inaccessible and cost-prohibitive for clinical application. The goal of our research is to develop and validate a brief and reliable, clinician-administered assessment tool-the ALS-Bulbar Dysfunction Index (ALS-BDI). This publication describes the study protocol that has been established to ascertain the tools' psychometric properties. The ALD-BDI's development closely follows guidelines outlined by the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN). Through the proposed study protocol, we expect to establish psychometric properties of both individual test items of the ALS-BDI as well as the final version of the entire tool, including test-retest and inter-rater reliability, construct validity using gold-standard assessment methods and responsiveness. This study has been reviewed and approved by research ethics boards at two data collection sites: Sunnybrook Health Science Centre, primary (Toronto, Canada; ID3080) and Mass General Brigham (#2013P001746, Boston, USA). Prior to participation in the study, the participants sign the informed consent in accordance with the Declaration of Helsinki. Once validated, the ALS-BDI will be disseminated to key stakeholders. Following validation, the ALS-BDI and any required training material will be implemented for clinical use in a context of a multidisciplinary ALS clinic and used as an outcome measure for clinical trials in ALS research.
Identifiants
pubmed: 35260465
pii: bmjopen-2021-060102
doi: 10.1136/bmjopen-2021-060102
pmc: PMC8905936
doi:
Types de publication
Journal Article
Research Support, N.I.H., Extramural
Langues
eng
Sous-ensembles de citation
IM
Pagination
e060102Subventions
Organisme : NIDCD NIH HHS
ID : R01 DC017291
Pays : United States
Informations de copyright
© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.
Déclaration de conflit d'intérêts
Competing interests: None declared.
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