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End of life care in high-grade glioma patients in three European countries: a comparative study

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Abstract

Exploring cross-national differences is useful to evaluate whether different patterns of end of life (EOL) care meet patient’s specific needs. This study aimed to (1) compare EOL care processes for high-grade glioma (HGG) patients in three European countries, (2) explore differences in perceived quality of care (QOC), and (3) identify aspects of good QOC in the EOL phase. We analyzed 207 questionnaires from relatives of deceased HGG patients, using a similar retrospective study design in three countries [The Netherlands (n = 83), Austria (n = 72) and the UK (n = 52)], and examined four subthemes: (1) organization of EOL care, (2) treatment preferences, (3) experiences with EOL care, (4) perceived QOC. Three months before death 75 % of patients were at home. In all countries, on average, 50 % were transferred to a hospital at least once and received effective symptom treatment during the last 3 months. In The Netherlands, Austria and UK, respectively, patients most often died at home (60 %), in a hospital (41 %) or hospice (41 %) (p < 0.001). Advance directives were present in 46 % of Dutch, 36 % of British and 6 % of Austrian patients (p < 0.001). Fifty-three percent of patients experienced good QOC, irrespective of country. Dying at the preferred place, satisfaction with information provided and effective symptom treatment were independently associated with good QOC. There are various cross-national differences in organization and experiences with EOL care for HGG, but patient’s perceived QOC is similar in the three countries. As symptom treatment was considered effective in only half of HGG patients, and independently predicted good QOC, this particularly needs further improvement in all countries.

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Funding

This work was supported by the St. Jacobusstichting The Hague, Foundation ‘ZOLEON’ and Foundation ‘Chanrone’.

Disclosures

The authors have declared no conflict of interest.

Author information

Authors and Affiliations

  1. Department of Neurology, VU University Medical Center, PO Box 7057, 1007 MB, Amsterdam, The Netherlands

    J. A. F. Koekkoek, L. Dirven, J. C. Reijneveld, E. M. Sizoo, T. J. Postma, M. J. B. Taphoorn & J. J. Heimans

  2. Department of Neurology, Medical Center Haaglanden, PO Box 432, 2501 CK, The Hague, The Netherlands

    J. A. F. Koekkoek & M. J. B. Taphoorn

  3. Department of Public and Occupational Health, The EMGO Institute for Health and Care Research, VU University Medical Center, PO Box 7057, 1007 MB, Amsterdam, The Netherlands

    H. R. W. Pasman & L. Deliens

  4. End-of-Life Care Research Group, Vrije Universiteit Brussel & Ghent University, Laarbeeklaan 103, 1090, Brussels, Belgium

    L. Deliens

  5. Edinburgh Centre for Neuro-Oncology (ECNO), Western General Hospital, Crewe Rd S, Edinburgh, EH4 2XU, Scotland, UK

    R. Grant & S. McNamara

  6. Department of Neurology, Kaiser Franz Joseph Hospital, Kundradstrasse 3, 1100, Vienna, Austria

    W. Grisold

  7. Hospice and Palliative Care Unit, Tyrolean Hospice Community, Sennstrasse 1, 6020, Innsbruck, Austria

    E. Medicus

  8. Department of Neurology (Neurooncology Group), Medical University of Innsbruck, Anichstrasse 35, A-6020, Innsbruck, Austria

    G. Stockhammer

  9. Department of Neurology, Landesklinikum St. Pölten, Propst Führer-Strasse 4, 3100, Sankt Pölten, Austria

    S. Oberndorfer

  10. Department of Medicine I, Austria Comprehensive Cancer Center-Central Nervous System Tumours Unit (CCC-CNS), Medical University of Vienna, Währinger Gürtel 18-20, 1090, Vienna, Austria

    B. Flechl & C. Marosi

Authors
  1. J. A. F. Koekkoek
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  2. L. Dirven
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  5. H. R. W. Pasman
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  6. T. J. Postma
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  7. L. Deliens
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  8. R. Grant
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  9. S. McNamara
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  10. W. Grisold
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  11. E. Medicus
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  12. G. Stockhammer
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  16. M. J. B. Taphoorn
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  17. J. J. Heimans
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Correspondence to J. A. F. Koekkoek.

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Koekkoek, J.A.F., Dirven, L., Reijneveld, J.C. et al. End of life care in high-grade glioma patients in three European countries: a comparative study. J Neurooncol 120, 303–310 (2014). https://doi.org/10.1007/s11060-014-1548-5

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  • DOI: https://doi.org/10.1007/s11060-014-1548-5

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