Vol.:(0123456789) 1 3 Journal of Neuro-Oncology https://doi.org/10.1007/s11060-018-2800-1 CLINICAL STUDY Clinical routine assessment of palliative care symptoms and concerns and caregiver burden in glioblastoma patients: an explorative feld study Matthias Seibl‑Leven 1,2  · Christian von Reeken 3  · Roland Goldbrunner 1,2  · Stefan Grau 1,2  · Maximilian Ingolf Ruge 1,2,4  · Norbert Galldiks 2,5,6  · Veronika Dunkl 2,5  · Martin Kocher 2,7  · Raymond Voltz 2,3,8,9  · Heidrun Golla 2,3 Received: 17 November 2017 / Accepted: 9 February 2018 © Springer Science+Business Media, LLC, part of Springer Nature 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-fve (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 difered [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 feld remains challenging as indicated by the limited response rate and lack of increased requests for the SPCCS. Modifed clinical routines including strengthening awareness of PC, and allowing proxy-assessment might help to overcome barriers. Keywords Palliative care · Glioblastoma · Caregiver burden · Palliative outcome scale · Zarit Burden Interview · Field study Matthias Seibl-Leven and Christian von Reeken have contributed equally to this work (co-frst authorship). * Heidrun Golla heidrun.golla@uk-koeln.de 1 Center of Neurosurgery, University Hospital of Cologne, Cologne, Germany 2 Center of Integrated Oncology (CIO), Universities of Cologne and Bonn, Cologne, Germany 3 Department of Palliative Medicine, University Hospital of Cologne, Kerpener Strasse 62, 50924 Cologne, Germany 4 Department of Stereotactic and Functional Neurosurgery, University Hospital of Cologne, Cologne, Germany 5 Department of Neurology, University Hospital of Cologne, Cologne, Germany 6 Institute for Neuroscience and Medicine (INM-3), Forschungszentrum Juelich, Juelich, Germany 7 Department of Radiation Oncology, University of Cologne, Cologne, Germany 8 Center for Clinical Trials, University Hospital of Cologne, Cologne, Germany 9 Medical Faculty, Center for Health Services Research (ZVFK), University of Cologne, Cologne, Germany