Journal of Neuro-Oncology

, Volume 119, Issue 2, pp 227–234 | Cite as

Prognostic awareness and communication of prognostic information in malignant glioma: a systematic review

  • Eli L. Diamond
  • Geoffrey W. Corner
  • Antonio De Rosa
  • William Breitbart
  • Allison J. Applebaum
Topic Review


Malignant glioma (MG) is a devastating neurological disease with a uniformly poor prognosis and a clinical course characterized by progressive functional and cognitive impairment. A small body of literature addresses patients’ and caregivers’ prognostic awareness (PA), or understanding of prognosis in patients with cancer. Studies that examine PA and desire for prognostic information among patients with MG are limited. We sought to review the existing literature on PA and communication of prognostic information to patients with MG. Fourteen studies examining PA or experience and preferences regarding communication of prognostic information were included. The definition and measurement of PA across studies varied, and the prevalence of accurate PA ranged from 25 to 100 % of participants. There is likely a subset of patients who do not desire accurate prognostic information, although the patient and disease characteristics that predict this preference are currently unknown. This review suggests that patients with MG desire prognostic information communicated in a manner that preserves hope. Systematic investigation to define communication needs for prognostic information in the unique clinical setting of MG is needed.


Prognostic awareness Malignant brain tumor Glioblastoma Prognosis Communication Information needs Supportive care 



This research was funded in part by National Cancer Institute grant T32CA009461-28 in support of AJA.

Conflict of interest

None of the authors have any conflicts of interest to disclose


  1. 1.
    Chochinov HM et al (2000) Prognostic awareness and the terminally ill. Psychosomatics 41(6):500–504PubMedCrossRefGoogle Scholar
  2. 2.
    Dunn SM et al (1993) Cancer by another name: a randomized trial of the effects of euphemism and uncertainty in communicating with cancer patients. J Clin Oncol 11(5):989–996PubMedGoogle Scholar
  3. 3.
    Lichtenthal WG et al (2009) Do rates of mental disorders and existential distress among advanced stage cancer patients increase as death approaches? Psychooncology 18(1):50–61PubMedCentralPubMedCrossRefGoogle Scholar
  4. 4.
    Wright AA et al (2008) Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 300(14):1665–1673PubMedCentralPubMedCrossRefGoogle Scholar
  5. 5.
    Bradley EH et al (2001) Documentation of discussions about prognosis with terminally ill patients 111(3):218–223Google Scholar
  6. 6.
    Mack JW et al (2006) Communication about prognosis between parents and physicians of children with cancer: parent preferences and the impact of prognostic information. J Clin Oncol 24(33):5265–5270PubMedCrossRefGoogle Scholar
  7. 7.
    Hebert RS et al (2009) Preparing family caregivers for death and bereavement. Insights from caregivers of terminally ill patients. J Pain Symptom Manag 37(1):3–12CrossRefGoogle Scholar
  8. 8.
    Ray A et al (2006) Peaceful awareness in patients with advanced cancer. J Palliat Med 9(6):1359–1368PubMedCrossRefGoogle Scholar
  9. 9.
    Applebaum AJ et al (2013) Conceptualizing prognostic awareness in advanced cancer: A systematic review. J Health Psychol. doi: 10.1177/1359105313484782
  10. 10.
    Weeks JC et al (2012) Patients’ expectations about effects of chemotherapy for advanced cancer. N Engl J Med 367(17):1616–1625PubMedCentralPubMedCrossRefGoogle Scholar
  11. 11.
    Fallowfield L, Ford S, Lewis S (1995) No news is not good news: information preferences of patients with cancer. Psychooncology 4(3):197–202PubMedCrossRefGoogle Scholar
  12. 12.
    Mack JW, Smith TJ (2012) Reasons why physicians do not have discussions about poor prognosis, why it matters, and what can be improved. J Clin Oncol 30(22):2715–2717PubMedCrossRefGoogle Scholar
  13. 13.
    Lamont EB, Christakis NA (2001) Prognostic disclosure to patients with cancer near the end of life. Ann Intern Med 134(12):1096–1105PubMedCrossRefGoogle Scholar
  14. 14.
    Morasso G et al (1997) Illness awareness in cancer patients: a conceptual framework and a preliminary classification hypothesis. Psychooncology 6(3):212–217PubMedCrossRefGoogle Scholar
  15. 15.
    Burns CM et al (2007) Fluctuating awareness of treatment goals among patients and their caregivers: a longitudinal study of a dynamic process. Support Care Cancer 15(2):187–196PubMedCrossRefGoogle Scholar
  16. 16.
    Ford E et al (2012) Systematic review of supportive care needs in patients with primary malignant brain tumors. Neuro Oncol 14(4):392–404PubMedCentralPubMedCrossRefGoogle Scholar
  17. 17.
    Davies E, Higginson IJ (2003) Communication, information and support for adults with malignant cerebral glioma: a systematic literature review. Support Care Cancer 11(1):21–29PubMedGoogle Scholar
  18. 18.
    Fagg J et al (2008) Area social fragmentation, social support for individuals and psychosocial health in young adults: evidence from a national survey in England. Soc Sci Med 66(2):242–254PubMedCrossRefGoogle Scholar
  19. 19.
    Davies E, Clarke C, Hopkins A (1996) Malignant cerebral glioma. 2. Perspectives of patients and relatives on the value of radiotherapy. Br Med J 313(7071):1512–1516CrossRefGoogle Scholar
  20. 20.
    Anderson SI, Taylor R, Whittle IR (1999) Mood disorders in patients after treatment for primary intracranial tumours. Br J Neurosurg 13(5):480–485PubMedCrossRefGoogle Scholar
  21. 21.
    Salander P, Bergenheim T, Henriksson R (1996) The creation of protection and hope in patients with malignant brain tumours. Soc Sci Med 42(7):985–996PubMedCrossRefGoogle Scholar
  22. 22.
    Lyons GJ (1996) The ‘PRESTON Profile’–the first disease-specific tool for assessing quality of life in patients with malignant glioma. Disabil Rehabil 18(9):460–468PubMedCrossRefGoogle Scholar
  23. 23.
    Ward-Smith P (1997) Stereotactic radiosurgery for malignant brain tumors: the patient’s perspective. J Neurosci Nurs 29(2):117–122PubMedCrossRefGoogle Scholar
  24. 24.
    Cavers D et al (2012) Social, psychological and existential well-being in patients with glioma and their caregivers: a qualitative study. CMAJ 184(7):E373–E382PubMedCentralPubMedCrossRefGoogle Scholar
  25. 25.
    Diaz JL et al (2009) Proper information during the surgical decision-making process lowers the anxiety of patients with high-grade gliomas. Acta Neurochir (Wien) 151(4):357–362CrossRefGoogle Scholar
  26. 26.
    Halkett GK et al (2010) The information and support needs of patients diagnosed with High Grade Glioma. Patient Educ Couns 79(1):112–119PubMedCrossRefGoogle Scholar
  27. 27.
    Rosenblum ML et al (2009) Odyssey of hope: a physician’s guide to communicating with brain tumor patients across the continuum of care. J Neurooncol 92(3):241–251PubMedCrossRefGoogle Scholar
  28. 28.
    Lobb EA, Halkett GKB, Nowak AK (2011) Patient and caregiver perceptions of communication of prognosis in high grade glioma. J Neurooncol 104(1):315–322PubMedCrossRefGoogle Scholar
  29. 29.
    Janda M et al (2006) Supportive care needs of people with brain tumours and their carers. Support Care Cancer 14(11):1094–1103PubMedCrossRefGoogle Scholar
  30. 30.
    Applebaum AJ et al. (2013) Optimism, social support, and mental health outcomes in patients with advanced cancer. PsychooncologyGoogle Scholar
  31. 31.
    Curtis JR et al (2008) An approach to understanding the interaction of hope and desire for explicit prognostic information among individuals with severe chronic obstructive pulmonary disease or advanced cancer. J Palliat Med 11(4):610–620PubMedCrossRefGoogle Scholar
  32. 32.
    Salmon P et al (2012) Faith and protection: the construction of hope by parents of children with leukemia and their oncologists. Oncologist 17(3):398–404PubMedCentralPubMedCrossRefGoogle Scholar
  33. 33.
    Prigerson HG (1992) Socialization to dying: social determinants of death acknowledgement and treatment among terminally ill geriatric patients. J Health Soc Behav 33(4):378–395PubMedCrossRefGoogle Scholar
  34. 34.
    Gao X et al (2012) Minor cognitive impairments in cancer patients magnify the effect of caregiver preferences on end-of-life care. J Pain Symptom Manag 45(4):650–659CrossRefGoogle Scholar
  35. 35.
    Moher D, Liberati A, Tetzlaff J, Altman DG, The PRISMA Group (2009) Preferred reporting items for systematic reviews and meta analyses: the PRISMA statement. PLoS Med 6(6):e1000097. doi: 10.1371/journal.pmed1000097

Copyright information

© Springer Science+Business Media New York 2014

Authors and Affiliations

  • Eli L. Diamond
    • 1
  • Geoffrey W. Corner
    • 2
  • Antonio De Rosa
    • 3
  • William Breitbart
    • 2
  • Allison J. Applebaum
    • 2
  1. 1.Department of NeurologyMemorial Sloan-Kettering Cancer CenterNew YorkUSA
  2. 2.Department of Psychiatry & Behavioral SciencesMemorial Sloan-Kettering Cancer CenterNew YorkUSA
  3. 3.Cyber LibraryMemorial Sloan-Kettering Cancer CenterNew YorkUSA

Personalised recommendations