Dyspnea in Amyotrophic Lateral Sclerosis: Rasch-Based Development and Validation of a Patient-Reported Outcome (DALS-15)

Journal of Pain and Symptom Management
Susanne VogtStefan Vielhaber

Abstract

Dyspnea is a cardinal but often underestimated symptom in amyotrophic lateral sclerosis (ALS). The lack of a satisfying assessment tool leads to diagnostic uncertainty and bears the risk that established life-prolonging and symptom-relieving therapeutic options will not be adequately applied. The objective of this study was to develop and validate a German language disease-specific patient-reported outcome measure to assess dyspnea in ALS by combination of a qualitative and quantitative approach using Rasch analysis. Based on input from clinical experts and patients, a preliminary 35-item questionnaire was developed and completed by 94 patients with ALS having dyspnea. Data were subjected to Rasch analysis and tested for required measurement issues such as appropriate response categories, the absence of differential item functioning, local independence, and unidimensionality. After iterative Rasch analyses, the final 15-item Dyspnea-ALS-Scale (DALS-15) was obtained. The scale satisfies the axioms of the Rasch model with good fit statistics, the absence of local dependency, and differential item functioning as well as acceptable unidimensionality. The DALS-15 is optimally targeted and suitable for group and individual use. It sh...Continue Reading

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Citations

May 31, 2019·Current Opinion in Supportive and Palliative Care·Marie T Williams, Kylie N Johnston
Mar 4, 2020·Journal of Neurology·Fabiola De MarchiSabrina Paganoni
May 13, 2020·Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration·Kate T BrizziJames D Berry
Mar 8, 2020·Journal of Pain and Symptom Management·Susanne VogtMichael Brinkers
Aug 14, 2021·Neurological Sciences : Official Journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology·Esma Nur KolbaşıEsen Kıyan
Jan 23, 2022·Health and Quality of Life Outcomes·Susan L HartmaierShreya Davé

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Amyotrophic Lateral Sclerosis (ALS) is a progressive nervous system disease associated with the death of neurons that control voluntary muscles. Discover the latest research on ALS here.

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