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@ARTICLE{SeiblLeven:844223,
      author       = {Seibl-Leven, Matthias and von Reeken, Christian and
                      Goldbrunner, Roland and Grau, Stefan and Ruge, Maximilian
                      Ingolf and Galldiks, Norbert and Dunkl, Veronika and Kocher,
                      M. and Voltz, Raymond and Golla, Heidrun},
      title        = {{C}linical routine assessment of palliative care symptoms
                      and concerns and caregiver burden in glioblastoma patients:
                      an explorative field study},
      journal      = {Journal of neuro-oncology},
      volume       = {138},
      number       = {2},
      issn         = {1573-7373},
      address      = {Dordrecht [u.a.]},
      publisher    = {Springer Science + Business Media B.V},
      reportid     = {FZJ-2018-01664},
      pages        = {321–333},
      year         = {2018},
      abstract     = {The implementation of self-reported outcome measurements
                      into clinical routine was tested to help facilitate early
                      access to palliative care (PC) for glioblastoma
                      (GBM)-patients. Measures detail PC symptoms and concerns and
                      caregiver burden. Between January 2014 and December 2016, a
                      total of 337 GBM-patients were discussed during meetings of
                      the neuro-oncology tumor board to examine further treatment
                      options. Each patient, along with their caregivers, was
                      requested to participate in self-assessment using the
                      palliative outcome scale (POS) and the Zarit Burden
                      Interview (ZBI). Analyses encompassed summary statistics,
                      non-parametric tests, visual graphic analysis, content
                      analysis and assessing the utilization of the specialized PC
                      consulting service (SPCCS). Ninety-five $(28\%)$
                      GBM-patients and 71 $(21\%)$ caregivers completed the
                      self-assessment. Of these, 20 patients and 12 caregivers
                      repeated the assessment at least once more during follow-up.
                      POS total scores were similar in the group of patients with
                      initial diagnosis [10 (0–31)] and those with later disease
                      stages like recurrent diagnosis [9 (0–25)], but ZBI total
                      scores differed [14 (0–51) vs. 24 (2–62)]. Single item
                      analysis demonstrated that anxiety and worries about the
                      future predominated. Caregivers were torn between high
                      engagement in caring and feeling overburdened. Still,
                      requests for the SPCCS showed no increase. Actual
                      implementation of measures like POS and ZBI for detecting PC
                      concerns and caregiver burden with GBM-patients in the field
                      remains challenging as indicated by the limited response
                      rate and lack of increased requests for the SPCCS. Modified
                      clinical routines including strengthening awareness of PC,
                      and allowing proxy-assessment might help to overcome
                      barriers},
      cin          = {INM-3},
      ddc          = {610},
      cid          = {I:(DE-Juel1)INM-3-20090406},
      pnm          = {572 - (Dys-)function and Plasticity (POF3-572)},
      pid          = {G:(DE-HGF)POF3-572},
      typ          = {PUB:(DE-HGF)16},
      pubmed       = {pmid:29464662},
      UT           = {WOS:000431890400012},
      doi          = {10.1007/s11060-018-2800-1},
      url          = {https://juser.fz-juelich.de/record/844223},
}