Skip to main content

Advertisement

SpringerLink
Log in

The end-of-life phase of high-grade glioma patients: a systematic review

  • Review Article
  • Published:
Supportive Care in Cancer Aims and scope Submit manuscript

Abstract

Background

High-grade gliomas (HGG) are rare and incurable; yet, these neoplasms result in a disproportionate share of cancer morbidity and mortality. Treatment of HGG patients is directed not merely towards prolonging life but also towards quality of life, which becomes the major goal in the end of life (EOL). The latter has received increasing attention over the last decade.

Methods

We reviewed the literature related to the EOL phase of HGG patients from 1966 up to April 2012. Articles were retrieved from PubMed, Embase, Cinahl, PsycINFO and Cochrane database. We then selected papers for analysis using pre-determined inclusion criteria and subtracted information on the topics of interest.

Results

The search yielded 695 articles, of which 17 were classified eligible for analysis according to pre-defined inclusion criteria. Reviewed topics were symptoms and signs, quality of life and quality of dying, caregiver burden, organization and location of palliative care, supportive treatment, and EOL decision making. Nearly all identified studies were observational, with only two non-randomized intervention studies. Symptom burden is high in the EOL phase and affects the quality of life of both patient and carer. Palliative care services are more intensively used compared to other cancer patients. Cognitive deficits increase as the disease progresses, hampering communication and decision making.

Conclusion

The EOL phase of HGG is substantially different from other patient groups, and more clinical studies in HGG on supportive medication, advance care planning and decision making are required. The organization of care, development of guidelines and interventions to decrease caregiver burden in the EOL phase are critical as well.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1
Fig. 2

Similar content being viewed by others

References

  1. Crocetti E, Trama A, Stiller C, Caldarella A, Soffietti R, Jaal J, Weber DC, Ricardi U, Slowinski J, Brandes A (2012) Epidemiology of glial and non-glial brain tumours in Europe. Eur J Cancer 48:1532–1542

    Article  PubMed  Google Scholar 

  2. Ricard D, Idbaih A, Ducray F, Lahutte M, Hoang-Xuan K, Delattre JY (2012) Primary brain tumours in adults. Lancet 379:1984–1996

    Article  PubMed  Google Scholar 

  3. Stupp R, Mason WP, van den Bent MJ, Weller M, Fisher B, Taphoorn MJ, Belanger K, Brandes AA, Marosi C, Bogdahn U, Curschmann J, Janzer RC, Ludwin SK, Gorlia T, Allgeier A, Lacombe D, Cairncross JG, Eisenhauer E, Mirimanoff RO (2005) Radiotherapy plus concomitant and adjuvant temozolomide for glioblastoma. N Engl J Med 352:987–996

    Article  CAS  PubMed  Google Scholar 

  4. van den Bent MJ (2007) Anaplastic oligodendroglioma and oligoastrocytoma. Neurol Clin 25:1089–1109

    Article  PubMed  Google Scholar 

  5. Preusser M, de Ribaupierre S, Wohrer A, Erridge SC, Hegi M, Weller M, Stupp R (2011) Current concepts and management of glioblastoma. Ann Neurol 70:9–21

    Article  PubMed  Google Scholar 

  6. Sepulveda C, Marlin A, Yoshida T, Ullrich A (2002) Palliative care: the World Health Organization’s global perspective. J Pain Symptom Manage 24:91–96

    Article  PubMed  Google Scholar 

  7. Foley KM, Carver AC (2001) Palliative care in neurology. Neurol Clin 19:789–799

    Article  CAS  PubMed  Google Scholar 

  8. Becker G, Hatami I, Xander C, Dworschak-Flach B, Olschewski M, Momm F, Deibert P, Higginson IJ, Blum HE (2011) Palliative cancer care: an epidemiologic study. J Clin Oncol 29:646–650

    Article  PubMed  Google Scholar 

  9. Horowitz S, Passik SD, Malkin MG (1996) ‘In sickness and in health’: a group intervention for spouses caring for patients with brain tumors. J Psychosoc Oncol 14:43–56

    Article  Google Scholar 

  10. van der Heide A, Onwuteaka-Philipsen BD, Rurup ML, Buiting HM, van Delden JJ, Hanssen-de Wolf JE, Janssen AG, Pasman HR, Rietjens JA, Prins CJ, Deerenberg IM, Gevers JK, van der Maas PJ, van der Wal G (2007) End-of-life practices in the Netherlands under the Euthanasia Act. N Engl J Med 356:1957–1965

    Article  PubMed  Google Scholar 

  11. Taillandier L, Blonski M, Darlix A, Hoang XK, Taillibert S, Cartalat CS, Piollet I, Le Rhun E (2011) Supportive care in neurooncology. Rev Neurol (Paris) 167:762–772

    Article  CAS  Google Scholar 

  12. Taillibert S, Laigle-Donadey F, Sanson M (2004) Palliative care in patients with primary brain tumors. Curr Opin Oncol 16:587–592

    Article  PubMed  Google Scholar 

  13. Chandana SR, Movva S, Arora M, Singh T (2008) Primary brain tumors in adults. Am Fam Physician 77:1423–1430

    PubMed  Google Scholar 

  14. Batchelor TT, Byrne TN (2006) Supportive care of brain tumor patients. Hematol Oncol Clin North Am 20:1337–1361

    Article  PubMed  Google Scholar 

  15. McNamara S (2008) An overview of palliative care for patients with brain tumours: an interprofessional approach. Br J Neurosci Nurs 4:435–437

    Google Scholar 

  16. Catt S, Chalmers A, Fallowfield L (2008) Psychosocial and supportive-care needs in high-grade glioma. Lancet Oncol 9:884–891

    Article  PubMed  Google Scholar 

  17. Ford E, Catt S, Chalmers A, Fallowfield L (2012) Systematic review of supportive care needs in patients with primary malignant brain tumors. Neuro Oncol 14:392–404

    Article  PubMed Central  PubMed  Google Scholar 

  18. Behin A, Hoang-Xuan K, Carpentier AF, Delattre JY (2003) Primary brain tumours in adults. Lancet 361:323–331

    Article  PubMed  Google Scholar 

  19. Triebel KL, Martin RC, Nabors LB, Marson DC (2009) Medical decision-making capacity in patients with malignant glioma. Neurology 73:2086–2092

    Article  PubMed  Google Scholar 

  20. Pace A, Di Lorenzo C, Capon A, Villani V, Benincasa D, Guariglia L, Salvati M, Brogna C, Mantini V, Mastromattei A, Pompili A (2012) Quality of care and rehospitalization rate in the last stage of disease in brain tumor patients assisted at home: a cost effectiveness study. J Palliat Med 15:225–227

    Article  PubMed  Google Scholar 

  21. Cavers D, Hacking B, Erridge SC, Morris PG, Kendall M, Murray SA (2012) Adjustment and support needs of glioma patients and their relatives: serial interviews. Psychooncology 22:1299–1305

    Article  PubMed  Google Scholar 

  22. Bausewein C, Hau P, Borasio GD, Voltz R (2003) How do patients with primary brain tumours die? Palliat Med 17:558–559

    Article  CAS  PubMed  Google Scholar 

  23. Oberndorfer S, Lindeck-Pozza E, Lahrmann H, Struhal W, Hitzenberger P, Grisold W (2008) The end-of-life hospital setting in patients with glioblastoma. J Palliat Med 11:26–30

    Article  PubMed  Google Scholar 

  24. Sizoo EM, Braam L, Postma TJ, Pasman HR, Heimans JJ, Klein M, Reijneveld JC, Taphoorn MJ (2010) Symptoms and problems in the end-of-life phase of high-grade glioma patients. Neuro Oncol 12:1162–1166

    Article  PubMed Central  PubMed  Google Scholar 

  25. Faithfull S, Cook K, Lucas C (2005) Palliative care of patients with a primary malignant brain tumour: case review of service use and support provided. Palliat Med 19:545–550

    Article  PubMed  Google Scholar 

  26. Pace A, Di Lorenzo C, Guariglia L, Jandolo B, Carapella CM, Pompili A (2009) End of life issues in brain tumor patients. J Neurooncol 91:39–43

    Article  PubMed  Google Scholar 

  27. Ostgathe C, Gaertner J, Kotterba M, Klein S, Lindena G, Nauck F, Radbruch L, Voltz R (2010) Differential palliative care issues in patients with primary and secondary brain tumours. Support Care Cancer 18:1157–1163

    Article  PubMed Central  PubMed  Google Scholar 

  28. Arber A, Faithfull S, Plaskota M, Lucas C, de Vries K (2010) A study of patients with a primary malignant brain tumour and their carers: symptoms and access to services. Int J Palliat Nurs 16:24–30

    PubMed  Google Scholar 

  29. Gofton TE, Graber J, Carver A (2012) Identifying the palliative care needs of patients living with cerebral tumors and metastases: a retrospective analysis. J Neurooncol 108:527–534

    Article  PubMed  Google Scholar 

  30. Davies E, Clarke C (2005) Views of bereaved relatives about quality of survival after radiotherapy for malignant cerebral glioma. J Neurol Neurosurg Psychiatry 76:555–561

    Article  CAS  PubMed  Google Scholar 

  31. Schubart JR, Kinzie MB, Farace E (2008) Caring for the brain tumor patient: family caregiver burden and unmet needs. Neuro Oncol 10:61–72

    Article  PubMed Central  PubMed  Google Scholar 

  32. Sherwood PR, Given BA, Doorenbos AZ, Given CW (2004) Forgotten voices: lessons from bereaved caregivers of persons with a brain tumour. Int J Palliat Nurs 10:67–75

    PubMed  Google Scholar 

  33. Salander P, Spetz A (2002) How do patients and spouses deal with the serious facts of malignant glioma? Palliat Med 16:305–313

    Article  PubMed  Google Scholar 

  34. Addington-Hall J, Altmann D (2000) Which terminally ill cancer patients in the United Kingdom receive care from community specialist palliative care nurses? J Adv Nurs 32:799–806

    CAS  PubMed  Google Scholar 

  35. Sizoo EM, Pasman HR, Buttolo J, Heimans JJ, Klein M, Deliens L, Reijneveld JC, Taphoorn MJ (2012) Decision-making in the end-of-life phase of high-grade glioma patients. Eur J Cancer 48:226–232

    Article  PubMed  Google Scholar 

  36. Pace A, Parisi C, Di Lelio M, Zizzari A, Petreri G, Giovannelli M, Pompili A (2007) Home rehabilitation for brain tumor patients. J Exp Clin Cancer Res 26:297–300

    CAS  PubMed  Google Scholar 

  37. Seeber AA, Hijdra A, Vermeulen M, Willems DL (2012) Discussions about treatment restrictions in chronic neurologic diseases: a structured review. Neurology 78:590–597

    Article  PubMed  Google Scholar 

  38. Goodman C, Evans C, Wilcock J, Froggatt K, Drennan V, Sampson E, Blanchard M, Bissett M, Iliffe S (2010) End of life care for community dwelling older people with dementia: an integrated review. Int J Geriatr Psychiatry 25:329–337

    Article  PubMed  Google Scholar 

  39. Mitsumoto H, Rabkin JG (2007) Palliative care for patients with amyotrophic lateral sclerosis: "prepare for the worst and hope for the best". JAMA 298:207–216

    Article  CAS  PubMed  Google Scholar 

  40. Gilbertson-White S, Aouizerat BE, Jahan T, Miaskowski C (2011) A review of the literature on multiple symptoms, their predictors, and associated outcomes in patients with advanced cancer. Palliat Support Care 9:81–102

    Article  PubMed  Google Scholar 

  41. Lorenz KA, Lynn J, Dy SM, Shugarman LR, Wilkinson A, Mularski RA, Morton SC, Hughes RG, Hilton LK, Maglione M, Rhodes SL, Rolon C, Sun VC, Shekelle PG (2008) Evidence for improving palliative care at the end of life: a systematic review. Ann Intern Med 148:147–159

    Article  PubMed  Google Scholar 

  42. Raijmakers NJ, van Zuylen L, Costantini M, Caraceni A, Clark J, Lundquist G, Voltz R, Ellershaw JE, van der Heide A (2011) Artificial nutrition and hydration in the last week of life in cancer patients. A systematic literature review of practices and effects. Ann Oncol 22:1478–1486

    Article  CAS  PubMed  Google Scholar 

  43. Johnston B, McGill M, Milligan S, McElroy D, Foster C, Kearney N (2009) Self care and end of life care in advanced cancer: literature review. Eur J Oncol Nurs 13:386–398

    Article  PubMed  Google Scholar 

  44. Krouwer HG, Pallagi JL, Graves NM (2000) Management of seizures in brain tumor patients at the end of life. J Palliat Med 3:465–475

    Article  CAS  PubMed  Google Scholar 

  45. de Groot M, Reijneveld JC, Aronica E, Heimans JJ (2012) Epilepsy in patients with a brain tumour: focal epilepsy requires focused treatment. Brain 135:1002–1016

    Article  PubMed  Google Scholar 

  46. Anderson GD, Saneto RP (2012) Current oral and non-oral routes of antiepileptic drug delivery. Adv Drug Deliv Rev 64:911–918

    Article  CAS  PubMed  Google Scholar 

  47. Janda M, Eakin EG, Bailey L, Walker D, Troy K (2006) Supportive care needs of people with brain tumours and their carers. Support Care Cancer 14:1094–1103

    Article  PubMed  Google Scholar 

  48. Singer PA, Robertson G, Roy DJ (1996) Bioethics for clinicians: 6. Advance care planning. CMAJ 155:1689–1692

    CAS  PubMed Central  PubMed  Google Scholar 

  49. Astrow AB, Sood JR, Nolan MT, Terry PB, Clawson L, Kub J, Hughes M, Sulmasy DP (2008) Decision-making in patients with advanced cancer compared with amyotrophic lateral sclerosis. J Med Ethics 34:664–668

    Article  CAS  PubMed Central  PubMed  Google Scholar 

  50. El-Jawahri A, Podgurski LM, Eichler AF, Plotkin SR, Temel JS, Mitchell SL, Chang Y, Barry MJ, Volandes AE (2010) Use of video to facilitate end-of-life discussions with patients with cancer: a randomized controlled trial. J Clin Oncol 28:305–310

    Article  PubMed  Google Scholar 

  51. van der Heide A, de Vogel-Voogt E, Visser AP, van der Rijt CC, van der Maas PJ (2007) Dying at home or in an institution: perspectives of Dutch physicians and bereaved relatives. Support Care Cancer 15:1413–1421

    Article  PubMed Central  PubMed  Google Scholar 

Download references

Acknowledgments

The authors received funding from St. Jacobusstichting, The Hague, the Netherlands.

Conflict of interest

All authors have declared no conflicts of interest.

Author information

Authors and Affiliations

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

    Eefje M. Sizoo, Linda Dirven, Jan J. Heimans, Jaap C. Reijneveld & Martin J. B. Taphoorn

  2. Department of Public and Occupational Health and the EMGO Institute for Health and Care Research, Expertise Center for Palliative Care, VU University Medical Center, Van der Boechorststraat 7, 1081 BT, Amsterdam, The Netherlands

    H. Roeline W. Pasman & Luc Deliens

  3. Department of Internal Medicine I, Clinical Division of Medical Oncology, Medical University of Vienna, Spitalgasse 23, A-1090, Vienna, Austria

    Christine Marosi

  4. Department of Neurology, Kaiser Franz Josef Hospital, Vienna, Kundratstraße 3, 1100, Vienna, Austria

    Wolfgang Grisold

  5. Department of Neurology, Innsbruck Medical University, Anichstraße 35, A-6020, Innsbruck, Austria

    Günther Stockhammer

  6. Department of Psychiatry and Psychotherapy, Innsbruck Medical University, Anichstraße 35, A-6020, Innsbruck, Austria

    Jonas Egeter

  7. Edinburgh Centre for Neuro-Oncology, Western General Hospital, Crewe Road South, EH4 2XU, Edinburgh, UK

    Robin Grant

  8. Department of Neurological Surgery, University of California, 505 Parnassus Avenue (Room 779), CA, 94143-0112, San Francisco, USA

    Susan Chang

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

    Luc Deliens

  10. Department of Neurology, Academic Medical Center Amsterdam, PO Box 22660, 1100 DD, Amsterdam, The Netherlands

    Jaap C. Reijneveld

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

    Martin J. B. Taphoorn

Authors
  1. Eefje M. Sizoo
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. H. Roeline W. Pasman
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Linda Dirven
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Christine Marosi
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Wolfgang Grisold
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Günther Stockhammer
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Jonas Egeter
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Robin Grant
    View author publications

    You can also search for this author in PubMed Google Scholar

  9. Susan Chang
    View author publications

    You can also search for this author in PubMed Google Scholar

  10. Jan J. Heimans
    View author publications

    You can also search for this author in PubMed Google Scholar

  11. Luc Deliens
    View author publications

    You can also search for this author in PubMed Google Scholar

  12. Jaap C. Reijneveld
    View author publications

    You can also search for this author in PubMed Google Scholar

  13. Martin J. B. Taphoorn
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Martin J. B. Taphoorn.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Sizoo, E.M., Pasman, H.R.W., Dirven, L. et al. The end-of-life phase of high-grade glioma patients: a systematic review. Support Care Cancer 22, 847–857 (2014). https://doi.org/10.1007/s00520-013-2088-9

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00520-013-2088-9

Keywords

Search

Navigation