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@ARTICLE{Schischlevskij:155979,
      author       = {Schischlevskij, Pavel and Cordts, Isabell and Günther,
                      René and Stolte, Benjamin and Zeller, Daniel and Schröter,
                      Carsten and Weyen, Ute and Regensburger, Martin and Wolf,
                      Joachim and Schneider, Ilka and Hermann, Andreas and
                      Metelmann, Moritz and Kohl, Zacharias and Linker, Ralf A and
                      Koch, Jan Christoph and Stendel, Claudia and Müschen, Lars
                      H and Osmanovic, Alma and Binz, Camilla and Klopstock,
                      Thomas and Dorst, Johannes and Ludolph, Albert and Boentert,
                      Matthias and Hagenacker, Tim and Deschauer, Marcus and
                      Lingor, Paul and Petri, Susanne and Schreiber-Katz, Olivia},
      title        = {{I}nformal {C}aregiving in {A}myotrophic {L}ateral
                      {S}clerosis ({ALS}): {A} {H}igh {C}aregiver {B}urden and
                      {D}rastic {C}onsequences on {C}aregivers' {L}ives.},
      journal      = {Brain Sciences},
      volume       = {11},
      number       = {6},
      issn         = {2076-3425},
      address      = {Basel},
      publisher    = {MDPI AG},
      reportid     = {DZNE-2021-01111},
      pages        = {748},
      year         = {2021},
      abstract     = {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,
                      $95\%$ 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.},
      keywords     = {amyotrophic lateral sclerosis (ALS) (Other) / anxiety
                      (Other) / caregiver burden (Other) / decreasing autonomy
                      (Other) / depression (Other) / functional status (Other) /
                      health-related quality of life (Other) / informal caregiving
                      (Other) / psychological support (Other) / socioeconomic
                      status (Other)},
      cin          = {AG Höglinger 1 / Clinical Research (Munich) / Clinical
                      Study Center Ulm / AG Teipel / AG Falkenburger},
      ddc          = {570},
      cid          = {I:(DE-2719)1110002 / I:(DE-2719)1111015 /
                      I:(DE-2719)5000077 / I:(DE-2719)1510100 /
                      I:(DE-2719)1710012},
      pnm          = {353 - Clinical and Health Care Research (POF4-353)},
      pid          = {G:(DE-HGF)POF4-353},
      typ          = {PUB:(DE-HGF)16},
      pubmed       = {pmid:34200087},
      pmc          = {pmc:PMC8228206},
      doi          = {10.3390/brainsci11060748},
      url          = {https://pub.dzne.de/record/155979},
}