A nation-wide, multi-center study on the quality of life of ALS patients in Germany

Please always quote using this URN: urn:nbn:de:bvb:20-opus-234147
  • Improving quality of life (QoL) is central to amyotrophic lateral sclerosis (ALS) treatment. This Germany-wide, multicenter cross-sectional study analyses the impact of different symptom-specific treatments and ALS variants on QoL. Health-related QoL (HRQoL) in 325 ALS patients was assessed using the Amyotrophic Lateral Sclerosis Assessment Questionnaire 5 (ALSAQ-5) and EuroQol Five Dimension Five Level Scale (EQ-5D-5L), together with disease severity (captured by the revised ALS Functional Rating Scale (ALSFRS-R)) and the current care andImproving quality of life (QoL) is central to amyotrophic lateral sclerosis (ALS) treatment. This Germany-wide, multicenter cross-sectional study analyses the impact of different symptom-specific treatments and ALS variants on QoL. Health-related QoL (HRQoL) in 325 ALS patients was assessed using the Amyotrophic Lateral Sclerosis Assessment Questionnaire 5 (ALSAQ-5) and EuroQol Five Dimension Five Level Scale (EQ-5D-5L), together with disease severity (captured by the revised ALS Functional Rating Scale (ALSFRS-R)) and the current care and therapies used by our cohort. At inclusion, the mean ALSAQ-5 total score was 56.93 (max. 100, best = 0) with a better QoL associated with a less severe disease status (β = −1.96 per increase of one point in the ALSFRS-R score, p < 0.001). “Limb-onset” ALS (lALS) was associated with a better QoL than “bulbar-onset” ALS (bALS) (mean ALSAQ-5 total score 55.46 versus 60.99, p = 0.040). Moreover, with the ALSFRS-R as a covariate, using a mobility aid (β = −7.60, p = 0.001), being tracheostomized (β = −14.80, p = 0.004) and using non-invasive ventilation (β = −5.71, p = 0.030) were associated with an improved QoL, compared to those at the same disease stage who did not use these aids. In contrast, antidepressant intake (β = 5.95, p = 0.007), and increasing age (β = 0.18, p = 0.023) were predictors of worse QoL. Our results showed that the ALSAQ-5 was better-suited for ALS patients than the EQ-5D-5L. Further, the early and symptom-specific clinical management and supply of assistive devices can significantly improve the individual HRQoL of ALS patients. Appropriate QoL questionnaires are needed to monitor the impact of treatment to provide the best possible and individualized care.show moreshow less

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Author: Tara Peseschkian, Isabell Cordts, René Günther, Benjamin Stolte, Daniel Zeller, Carsten Schröter, Ute Weyen, Martin Regensburger, Joachim Wolf, Ilka Schneider, Andreas Hermann, Moritz Metelmann, Zacharias Kohl, Ralf A. Linker, Jan Christoph Koch, Boriana Büchner, Ulrike Weiland, Erik Schönfelder, Felix Heinrich, Alma Osmanovic, Thomas Klopstock, Johannes Dorst, Albert C. Ludolph, Matthias Boentert, Tim Hagenacker, Marcus Deschauer, Paul Lingor, Susanne Petri, Olivia Schreiber-Katz
URN:urn:nbn:de:bvb:20-opus-234147
Document Type:Journal article
Faculties:Medizinische Fakultät / Neurologische Klinik und Poliklinik
Language:English
Parent Title (English):Brain Sciences
ISSN:2076-3425
Year of Completion:2021
Volume:11
Issue:3
Article Number:372
Source:Brain Science (2021) 11:3, 372. https://doi.org/10.3390/brainsci11030372
DOI:https://doi.org/10.3390/brainsci11030372
Dewey Decimal Classification:6 Technik, Medizin, angewandte Wissenschaften / 61 Medizin und Gesundheit / 610 Medizin und Gesundheit
Tag:ALS treatment; Amyotrophic Lateral Sclerosis (ALS); Amyotrophic Lateral Sclerosis Assessment Questionnaire 5 (ALSAQ-5); EuroQol Five Dimension Five Level Scale (EQ-5D-5L); assistive devices; health-related quality of life (HRQoL); quality of life (QoL); symptom-specific treatment; “bulbar-onset” ALS (bALS); “limb-onset” ALS (lALS)
Release Date:2022/06/22
Date of first Publication:2021/03/14
Licence (German):License LogoCC BY: Creative-Commons-Lizenz: Namensnennung 4.0 International