Seibl-Leven, Matthias, von Reeken, Christian, Goldbrunner, Roland, Grau, Stefan ORCID: 0000-0002-9742-527X, Ruge, Maximilian Ingolf, Galldiks, Norbert ORCID: 0000-0002-2485-1796, Dunkl, Veronika ORCID: 0000-0001-6885-7666, Kocher, Martin ORCID: 0000-0002-5674-9227, Voltz, Raymond ORCID: 0000-0002-4761-3395 and Golla, Heidrun ORCID: 0000-0002-4403-630X (2018). Clinical routine assessment of palliative care symptoms and concerns and caregiver burden in glioblastoma patients: an explorative field study. J. Neuro-Oncol., 138 (2). S. 321 - 334. NEW YORK: SPRINGER. ISSN 1573-7373

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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.

Item Type: Journal Article
Creators:
CreatorsEmailORCIDORCID Put Code
Seibl-Leven, MatthiasUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
von Reeken, ChristianUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Goldbrunner, RolandUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Grau, StefanUNSPECIFIEDorcid.org/0000-0002-9742-527XUNSPECIFIED
Ruge, Maximilian IngolfUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Galldiks, NorbertUNSPECIFIEDorcid.org/0000-0002-2485-1796UNSPECIFIED
Dunkl, VeronikaUNSPECIFIEDorcid.org/0000-0001-6885-7666UNSPECIFIED
Kocher, MartinUNSPECIFIEDorcid.org/0000-0002-5674-9227UNSPECIFIED
Voltz, RaymondUNSPECIFIEDorcid.org/0000-0002-4761-3395UNSPECIFIED
Golla, HeidrunUNSPECIFIEDorcid.org/0000-0002-4403-630XUNSPECIFIED
URN: urn:nbn:de:hbz:38-183508
DOI: 10.1007/s11060-018-2800-1
Journal or Publication Title: J. Neuro-Oncol.
Volume: 138
Number: 2
Page Range: S. 321 - 334
Date: 2018
Publisher: SPRINGER
Place of Publication: NEW YORK
ISSN: 1573-7373
Language: English
Faculty: Faculty of Medicine
Divisions: Faculty of Medicine > Sonstiges > Zentrum für Versorgungsforschung Köln
Subjects: Medical sciences Medicine
Uncontrolled Keywords:
KeywordsLanguage
RANDOMIZED CONTROLLED-TRIAL; QUALITY-OF-LIFE; ADVANCED CANCER; OUTCOME SCALE; ONCOLOGY CARE; NEEDS; VALIDATION; DEMENTIA; INTEGRATION; INTERVIEWMultiple languages
Oncology; Clinical NeurologyMultiple languages
Refereed: Yes
URI: http://kups.ub.uni-koeln.de/id/eprint/18350

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