Disease progression impacts health-related quality of life in amyotrophic lateral sclerosis

Tino Prell; Nayana Gaur; Beatrice Stubendorff; Annekathrin Rödiger; Otto W. Witte; Julian Grosskreutz

doi:10.1016/j.jns.2018.12.035

Disease progression impacts health-related quality of life in amyotrophic lateral sclerosis

Tino Prell^*, Nayana Gaur, Beatrice Stubendorff, Annekathrin Rödiger, Otto W. Witte, Julian Grosskreutz

^*Corresponding author for this work

Friedrich Schiller University Jena

13 Citations (Scopus)

Abstract

Objectives: To determine the impact of disease progression on health-related quality of life in amyotrophic lateral sclerosis (ALS). Methods: A total of 161 patients with ALS were enrolled. Assessments included the revised ALS Functional Rating Scale and the ALS Assessment Questionnaire (ALSAQ-40). Data analysis comprised linear regression and multivariate analyses. Results: ALSFRS-R score (β = 0.75, p < 0.001), depression (β = 0.08, p < 0.001), pain (β = 0.07, p < 0.001), hopelessness (β = 0.07, p = 0.001), and progression rate (β = 0.02, p = 0.02) explained 76% of the ALSAQ-40 summary index variance. Progression rate alone explained 7% of the ALSAQ-40 summary index variance. The subdomains of emotional well-being, followed by ADL, and finally communication and eating were most strongly influenced by progression rate. Conclusion: Our study demonstrates the importance of physical health for emotional well-being. In particular, slower disease progression is associated with higher levels of emotional well-being in ALS.

Original language	English
Journal	Journal of the Neurological Sciences
Volume	397
Pages (from-to)	92-95
Number of pages	4
ISSN	0022-510X
DOIs	https://doi.org/10.1016/j.jns.2018.12.035
Publication status	Published - 15.02.2019
Externally published	Yes

Funding

The present study was supported by the German Bundesministerium für Bildung und Forschung (BMBF) grant OnWEBDuals (FKZ 01ED015511A) to Julian Grosskreutz under the aegis of the EU Joint Programme - Neurodegenerative Disease Research (JPND) and a BMBF grant PYRAMID (FKZ 01GM1304) to Julian Grosskreutz in the framework of the ERANET E-RARE program. The present study was supported by the German Bundesministerium für Bildung und Forschung (BMBF) grant OnWEBDuals ( FKZ 01ED015511A ) to Julian Grosskreutz under the aegis of the EU Joint Programme - Neurodegenerative Disease Research (JPND) and a BMBF grant PYRAMID ( FKZ 01GM1304 ) to Julian Grosskreutz in the framework of the ERANET E-RARE program.

Research Areas and Centers

Centers: Center for Neuromuscular Diseases

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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10.1016/j.jns.2018.12.035

Cite this

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title = "Disease progression impacts health-related quality of life in amyotrophic lateral sclerosis",

abstract = "Objectives: To determine the impact of disease progression on health-related quality of life in amyotrophic lateral sclerosis (ALS). Methods: A total of 161 patients with ALS were enrolled. Assessments included the revised ALS Functional Rating Scale and the ALS Assessment Questionnaire (ALSAQ-40). Data analysis comprised linear regression and multivariate analyses. Results: ALSFRS-R score (β = 0.75, p < 0.001), depression (β = 0.08, p < 0.001), pain (β = 0.07, p < 0.001), hopelessness (β = 0.07, p = 0.001), and progression rate (β = 0.02, p = 0.02) explained 76\% of the ALSAQ-40 summary index variance. Progression rate alone explained 7\% of the ALSAQ-40 summary index variance. The subdomains of emotional well-being, followed by ADL, and finally communication and eating were most strongly influenced by progression rate. Conclusion: Our study demonstrates the importance of physical health for emotional well-being. In particular, slower disease progression is associated with higher levels of emotional well-being in ALS.",

author = "Tino Prell and Nayana Gaur and Beatrice Stubendorff and Annekathrin R{\"o}diger and Witte, \{Otto W.\} and Julian Grosskreutz",

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year = "2019",

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doi = "10.1016/j.jns.2018.12.035",

language = "English",

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T1 - Disease progression impacts health-related quality of life in amyotrophic lateral sclerosis

AU - Prell, Tino

AU - Gaur, Nayana

AU - Stubendorff, Beatrice

AU - Rödiger, Annekathrin

AU - Witte, Otto W.

AU - Grosskreutz, Julian

PY - 2019/2/15

Y1 - 2019/2/15

N2 - Objectives: To determine the impact of disease progression on health-related quality of life in amyotrophic lateral sclerosis (ALS). Methods: A total of 161 patients with ALS were enrolled. Assessments included the revised ALS Functional Rating Scale and the ALS Assessment Questionnaire (ALSAQ-40). Data analysis comprised linear regression and multivariate analyses. Results: ALSFRS-R score (β = 0.75, p < 0.001), depression (β = 0.08, p < 0.001), pain (β = 0.07, p < 0.001), hopelessness (β = 0.07, p = 0.001), and progression rate (β = 0.02, p = 0.02) explained 76% of the ALSAQ-40 summary index variance. Progression rate alone explained 7% of the ALSAQ-40 summary index variance. The subdomains of emotional well-being, followed by ADL, and finally communication and eating were most strongly influenced by progression rate. Conclusion: Our study demonstrates the importance of physical health for emotional well-being. In particular, slower disease progression is associated with higher levels of emotional well-being in ALS.

AB - Objectives: To determine the impact of disease progression on health-related quality of life in amyotrophic lateral sclerosis (ALS). Methods: A total of 161 patients with ALS were enrolled. Assessments included the revised ALS Functional Rating Scale and the ALS Assessment Questionnaire (ALSAQ-40). Data analysis comprised linear regression and multivariate analyses. Results: ALSFRS-R score (β = 0.75, p < 0.001), depression (β = 0.08, p < 0.001), pain (β = 0.07, p < 0.001), hopelessness (β = 0.07, p = 0.001), and progression rate (β = 0.02, p = 0.02) explained 76% of the ALSAQ-40 summary index variance. Progression rate alone explained 7% of the ALSAQ-40 summary index variance. The subdomains of emotional well-being, followed by ADL, and finally communication and eating were most strongly influenced by progression rate. Conclusion: Our study demonstrates the importance of physical health for emotional well-being. In particular, slower disease progression is associated with higher levels of emotional well-being in ALS.

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DO - 10.1016/j.jns.2018.12.035

M3 - Journal articles

C2 - 30597420

AN - SCOPUS:85059160133

SN - 0022-510X

VL - 397

SP - 92

EP - 95

JO - Journal of the Neurological Sciences

JF - Journal of the Neurological Sciences

ER -

Disease progression impacts health-related quality of life in amyotrophic lateral sclerosis

Abstract

Funding

Research Areas and Centers

UN SDGs

Access to Document

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