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

Peseschkian T, Cordts I, Günther R, Stolte B, Zeller D, Schröter C, Weyen U, Regensburger M, Wolf J, Schneider I, Hermann A, Metelmann M, Kohl Z, Linker RA, Koch JC, Büchner B, Weiland U, Schönfelder E, Heinrich F, Osmanovic A, Klopstock T, Dorst J, Ludolph AC, Boentert M, Hagenacker T, Deschauer M, Lingor P, Petri S, Schreiber-Katz O (2021)

Publication Type: Journal article

Publication year: 2021

Journal

Book Volume: 11

Article Number: 372

Journal Issue: 3

DOI: 10.3390/brainsci11030372

Abstract

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 Eu-roQol 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, antide-pressant 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.

Authors with CRIS profile

Involved external institutions

Klinikum rechts der Isar Germany (DE) Julius-Maximilians-Universität Würzburg Germany (DE) Klinik Hoher Meißner Germany (DE) Universitätsklinikum Carl Gustav Carus Dresden Germany (DE) Berufsgenossenschaftliches Universitätsklinikum Bergmannsheil Germany (DE) Diakonissenkrankenhaus Mannheim GmbH Germany (DE) Universitätsklinikum Essen Germany (DE) Medizinische Hochschule Hannover (MHH) / Hannover Medical School Germany (DE) Universität Regensburg Germany (DE) Universität Ulm Germany (DE) Martin-Luther-Universität Halle-Wittenberg (MLU) Germany (DE) Universitätsklinikum Münster Germany (DE) Universität Rostock Germany (DE) Klinikum der Universität München Germany (DE) Georg-August-Universität Göttingen Germany (DE) Universitätsklinikum Leipzig Germany (DE)

How to cite

APA:

Peseschkian, T., Cordts, I., Günther, R., Stolte, B., Zeller, D., Schröter, C.,... Schreiber-Katz, O. (2021). A nation-wide, multi-center study on the quality of life of ALS patients in Germany. Brain Sciences, 11(3). https://doi.org/10.3390/brainsci11030372

MLA:

Peseschkian, Tara, et al. "A nation-wide, multi-center study on the quality of life of ALS patients in Germany." Brain Sciences 11.3 (2021).

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