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Journal of Neuro-Oncology

, Volume 112, Issue 3, pp 403–411 | Cite as

The caregivers’ perspective on the end-of-life phase of glioblastoma patients

  • Birgit FlechlEmail author
  • Michael Ackerl
  • Cornelia Sax
  • Stefan Oberndorfer
  • Bernadette Calabek
  • Eefje Sizoo
  • Jaap Reijneveld
  • Richard Crevenna
  • Mohammad Keilani
  • Alexander Gaiger
  • Karin Dieckmann
  • Matthias Preusser
  • Martin J. B. Taphoorn
  • Christine Marosi
Clinical Study

Abstract

Glioblastoma multiforme (GBM) still harbors a fatal prognosis. The involvement of the neurocognition and psyche poses unique challenges for care provision by relatives. We lack data about the caregivers perspective on the end-of-life (EOL) phase of GBM patients to improve counseling and support. In this study we investigated the experiences of 52 caregivers of deceased GBM patients treated in Austria. We used a questionnaire developed by the University Medical Centre of Amsterdam for exploration of the EOL-phase in glioma patients. The caregivers (17 men, 34 women) completed the questionnaire in median three years after the patients death. 29 % of caregivers reported that they felt incompletely prepared for their tasks, however, those with higher education levels felt significantly better informed. 29 % suffered from financial difficulties, which was associated with burnout (60 %) and reduced quality of life (QOL). The patients most common symptoms reported by caregivers were fatigue (87 %), reduced consciousness (81 %) and aphasia (77 %). 22 % of patients were bedbound during their last three months increasing to 80 % in the last week of life. The reported QOL of caregivers was very low and did not differ between caregivers of patients, who died at home (40 %) and caregivers of patients, who died in hospital (46 %). The caregiver reported that their QOL was only slightly better than the QOL they attributed to the patients. Furthermore, the high frequency of financial difficulties, burnout symptoms and feelings of insufficient information emphasize the urgent need for support and training dedicated to caregivers.

Keywords

Caregivers burden End-of-life care Quality of life Glioblastoma 

Notes

Acknowledgments

This study is part of the doctoral thesis “Evaluation of Health-related Quality of Life in adult patients with glioblastoma multiforme and in their primary caregivers” in Austria (available at: www.meduniwien.ac.at/clins).

Funding

Medical Scientific fund of the Mayor of the city of Vienna. Role of the funding source: Personnel expenses.

Conflict of interest

The authors declare that they have no conflict of interest.

Supplementary material

11060_2013_1069_MOESM1_ESM.doc (156 kb)
Supplementary material 1 (DOC 155 kb)
11060_2013_1069_MOESM2_ESM.pdf (64 kb)
Supplementary material 2 (PDF 64 kb)

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Copyright information

© Springer Science+Business Media New York 2013

Authors and Affiliations

  • Birgit Flechl
    • 1
    Email author
  • Michael Ackerl
    • 1
  • Cornelia Sax
    • 1
  • Stefan Oberndorfer
    • 2
  • Bernadette Calabek
    • 3
  • Eefje Sizoo
    • 4
  • Jaap Reijneveld
    • 4
  • Richard Crevenna
    • 5
  • Mohammad Keilani
    • 5
  • Alexander Gaiger
    • 6
  • Karin Dieckmann
    • 7
  • Matthias Preusser
    • 1
  • Martin J. B. Taphoorn
    • 4
  • Christine Marosi
    • 1
  1. 1.Department of Medicine IMedical University of Vienna, Austria Comprehensive Cancer Center, Central Nervous System Tumors Unit (CCC-CNS)ViennaAustria
  2. 2.Department of NeurologyLandesklinikum St. PöltenSt. PöltenAustria
  3. 3.Department of NeurologyKaiser-Franz-Josef HospitalViennaAustria
  4. 4.Department of NeurologyVU University Medical CentreAmsterdamThe Netherlands
  5. 5.Department of Physical Medicine and RehabilitationMedical University of ViennaViennaAustria
  6. 6.Division of Hematology and Hemostaseology, Department of Internal Medicine 1Medical University of ViennaViennaAustria
  7. 7.Department of RadiotherapyMedical University of ViennaViennaAustria

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