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000155979 1001_ $$aSchischlevskij, Pavel$$b0
000155979 245__ $$aInformal Caregiving in Amyotrophic Lateral Sclerosis (ALS): A High Caregiver Burden and Drastic Consequences on Caregivers' Lives.
000155979 260__ $$aBasel$$bMDPI AG$$c2021
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000155979 520__ $$aAmyotrophic 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% CI [6.84; 15.87], p < 0.001), patients' wheelchair dependency (+9.30, 95% CI [5.94; 12.66], p < 0.001) and was interrelated with the CGs' depression (rp = 0.627, p < 0.001, n = 234), anxiety (rp = 0.550, p < 0.001, n = 234), and poorer physical condition (rp = -0.362, p < 0.001, n = 237). Moreover, female CGs showed symptoms of anxiety more often, which also correlated with the patients' impairment in daily routine (rs = -0.280, p < 0.001, n = 169). As increasing disease severity, along with decreasing autonomy, was the main predictor of caregiver burden and showed to create relevant (negative) implications on CGs' lives, patient care and supportive therapies should address this issue. Moreover, in order to preserve the mental and physical health of the CGs, new concepts of care have to focus on both, on not only patients but also their CGs and gender-associated specific issues. As caregiving in ALS also significantly influences the socioeconomic status by restrictions in CGs' work lives and income, and the main reported needs being lack of psychological support and a high bureaucracy, the situation of CGs needs more attention. Apart from their own multi-disciplinary medical and psychological care, more support in care and patient management issues is required.
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000155979 650_7 $$2Other$$aamyotrophic lateral sclerosis (ALS)
000155979 650_7 $$2Other$$aanxiety
000155979 650_7 $$2Other$$acaregiver burden
000155979 650_7 $$2Other$$adecreasing autonomy
000155979 650_7 $$2Other$$adepression
000155979 650_7 $$2Other$$afunctional status
000155979 650_7 $$2Other$$ahealth-related quality of life
000155979 650_7 $$2Other$$ainformal caregiving
000155979 650_7 $$2Other$$apsychological support
000155979 650_7 $$2Other$$asocioeconomic status
000155979 7001_ $$aCordts, Isabell$$b1
000155979 7001_ $$0P:(DE-2719)2811849$$aGünther, René$$b2$$udzne
000155979 7001_ $$0P:(DE-HGF)0$$aStolte, Benjamin$$b3
000155979 7001_ $$aZeller, Daniel$$b4
000155979 7001_ $$aSchröter, Carsten$$b5
000155979 7001_ $$aWeyen, Ute$$b6
000155979 7001_ $$0P:(DE-HGF)0$$aRegensburger, Martin$$b7
000155979 7001_ $$aWolf, Joachim$$b8
000155979 7001_ $$aSchneider, Ilka$$b9
000155979 7001_ $$0P:(DE-2719)2811732$$aHermann, Andreas$$b10$$udzne
000155979 7001_ $$aMetelmann, Moritz$$b11
000155979 7001_ $$0P:(DE-HGF)0$$aKohl, Zacharias$$b12
000155979 7001_ $$aLinker, Ralf A$$b13
000155979 7001_ $$aKoch, Jan Christoph$$b14
000155979 7001_ $$0P:(DE-2719)2812141$$aStendel, Claudia$$b15$$udzne
000155979 7001_ $$aMüschen, Lars H$$b16
000155979 7001_ $$0P:(DE-HGF)0$$aOsmanovic, Alma$$b17
000155979 7001_ $$aBinz, Camilla$$b18
000155979 7001_ $$0P:(DE-2719)2810704$$aKlopstock, Thomas$$b19$$udzne
000155979 7001_ $$aDorst, Johannes$$b20
000155979 7001_ $$0P:(DE-2719)2812633$$aLudolph, Albert$$b21$$udzne
000155979 7001_ $$0P:(DE-HGF)0$$aBoentert, Matthias$$b22
000155979 7001_ $$0P:(DE-HGF)0$$aHagenacker, Tim$$b23
000155979 7001_ $$aDeschauer, Marcus$$b24
000155979 7001_ $$0P:(DE-2719)2812561$$aLingor, Paul$$b25$$udzne
000155979 7001_ $$aPetri, Susanne$$b26
000155979 7001_ $$0P:(DE-HGF)0$$aSchreiber-Katz, Olivia$$b27
000155979 770__ $$aCaregiver Burden in Movement Disorders and Neurodegenerative Diseases
000155979 773__ $$0PERI:(DE-600)2651993-8$$a10.3390/brainsci11060748$$gVol. 11, no. 6, p. 748 -$$n6$$p748$$tBrain Sciences$$v11$$x2076-3425$$y2021
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