TY  - JOUR
AU  - Schischlevskij, Pavel
AU  - Cordts, Isabell
AU  - Günther, René
AU  - Stolte, Benjamin
AU  - Zeller, Daniel
AU  - Schröter, Carsten
AU  - Weyen, Ute
AU  - Regensburger, Martin
AU  - Wolf, Joachim
AU  - Schneider, Ilka
AU  - Hermann, Andreas
AU  - Metelmann, Moritz
AU  - Kohl, Zacharias
AU  - Linker, Ralf A
AU  - Koch, Jan Christoph
AU  - Stendel, Claudia
AU  - Müschen, Lars H
AU  - Osmanovic, Alma
AU  - Binz, Camilla
AU  - Klopstock, Thomas
AU  - Dorst, Johannes
AU  - Ludolph, Albert
AU  - Boentert, Matthias
AU  - Hagenacker, Tim
AU  - Deschauer, Marcus
AU  - Lingor, Paul
AU  - Petri, Susanne
AU  - Schreiber-Katz, Olivia
TI  - Informal Caregiving in Amyotrophic Lateral Sclerosis (ALS): A High Caregiver Burden and Drastic Consequences on Caregivers' Lives.
JO  - Brain Sciences
VL  - 11
IS  - 6
SN  - 2076-3425
CY  - Basel
PB  - MDPI AG
M1  - DZNE-2021-01111
SP  - 748
PY  - 2021
AB  - 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
KW  - amyotrophic lateral sclerosis (ALS) (Other)
KW  - anxiety (Other)
KW  - caregiver burden (Other)
KW  - decreasing autonomy (Other)
KW  - depression (Other)
KW  - functional status (Other)
KW  - health-related quality of life (Other)
KW  - informal caregiving (Other)
KW  - psychological support (Other)
KW  - socioeconomic status (Other)
LB  - PUB:(DE-HGF)16
C6  - pmid:34200087
C2  - pmc:PMC8228206
DO  - DOI:10.3390/brainsci11060748
UR  - https://pub.dzne.de/record/155979
ER  -