%0 Journal Article
%A Schischlevskij, Pavel
%A Cordts, Isabell
%A Günther, René
%A Stolte, Benjamin
%A Zeller, Daniel
%A Schröter, Carsten
%A Weyen, Ute
%A Regensburger, Martin
%A Wolf, Joachim
%A Schneider, Ilka
%A Hermann, Andreas
%A Metelmann, Moritz
%A Kohl, Zacharias
%A Linker, Ralf A
%A Koch, Jan Christoph
%A Stendel, Claudia
%A Müschen, Lars H
%A Osmanovic, Alma
%A Binz, Camilla
%A Klopstock, Thomas
%A Dorst, Johannes
%A Ludolph, Albert
%A Boentert, Matthias
%A Hagenacker, Tim
%A Deschauer, Marcus
%A Lingor, Paul
%A Petri, Susanne
%A Schreiber-Katz, Olivia
%T Informal Caregiving in Amyotrophic Lateral Sclerosis (ALS): A High Caregiver Burden and Drastic Consequences on Caregivers' Lives.
%J Brain Sciences
%V 11
%N 6
%@ 2076-3425
%C Basel
%I MDPI AG
%M DZNE-2021-01111
%P 748
%D 2021
%X Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disease that causes progressive autonomy loss and need for care. This does not only affect patients themselves, but also the patients' informal caregivers (CGs) in their health, personal and professional lives. The big efforts of this multi-center study were not only to evaluate the caregivers' burden and to identify its predictors, but it also should provide a specific understanding of the needs of ALS patients' CGs and fill the gap of knowledge on their personal and work lives. Using standardized questionnaires, primary data from patients and their main informal CGs (n = 249) were collected. Patients' functional status and disease severity were evaluated using the Barthel Index, the revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R) and the King's Stages for ALS. The caregivers' burden was recorded by the Zarit Burden Interview (ZBI). Comorbid anxiety and depression of caregivers were assessed by the Hospital Anxiety and Depression Scale. Additionally, the EuroQol Five Dimension Five Level Scale evaluated their health-related quality of life. The caregivers' burden was high (mean ZBI = 26/88, 0 = no burden, ≥24 = highly burdened) and correlated with patients' functional status (rp = -0.555, p < 0.001, n = 242). It was influenced by the CGs' own mental health issues due to caregiving (+11.36, 95
%K amyotrophic lateral sclerosis (ALS) (Other)
%K anxiety (Other)
%K caregiver burden (Other)
%K decreasing autonomy (Other)
%K depression (Other)
%K functional status (Other)
%K health-related quality of life (Other)
%K informal caregiving (Other)
%K psychological support (Other)
%K socioeconomic status (Other)
%F PUB:(DE-HGF)16
%9 Journal Article
%$ pmid:34200087
%2 pmc:PMC8228206
%R 10.3390/brainsci11060748
%U https://pub.dzne.de/record/155979