Abstract
Palliative care provision for patients with high-grade malignant glioma is often under-utilised. Difficulties in prognostication and inter-patient variability in survival may limit timely referral. This study sought to (1) describe the clinical presentation of short-term survivors of malignant glioma (survival time <120 days); (2) map their hospital utilisation, including palliative and supportive care service use, and place of death; (3) identify factors which may be important to serve as a prompt for palliative care referral. A retrospective cohort study of incident malignant glioma cases between 2003–2009 surviving <120 days in Victoria, Australia was undertaken (n = 482). Cases were stratified according to the patient’s survival status (dead vs. alive) at the end of the diagnosis admission, and at 120 days from diagnosis. Palliative care was received by 78 % of patients who died during the diagnosis admission. Only 12 % of patients who survived the admission and then deteriorated rapidly dying in the following 120 days were referred to palliative care in their hospital admission, suggesting an important clinical subgroup that may miss out on being linked into palliative care services. The strongest predictor of death during the diagnosis admission was the presence of cognitive or behavioural symptoms, which may be an important prompt for early palliative care referral.
Similar content being viewed by others
References
Lin E, Rosenthal MA, Le BH, Eastman P (2012) Neuro-oncology and palliative care: a challenging interface. Neuro-Oncology 14(suppl 4):iv3–iv7
Philip J, Collins A, Brand CA, Gold M, Moore G, Sundararajan V et al. (2013) Health care professionals’ perspectives of living and dying with primary malignant glioma: Implications for a unique cancer trajectory. Palliat Support Care. doi:10.1017/S1478951513000576
Lobb EA, Halkett G, Nowak A (2011) Patient and caregiver perceptions of communication of prognosis in high grade glioma. J Neurooncol 104(1):315–322
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(7):545–550
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(3):527–534
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(1):24–30
Collins A, Lethborg C, Brand C, Gold M, Moore G, Sundararajan V et al (2014) The challenges and suffering of caring for people with primary malignant glioma: qualitative perspectives on improving current supportive and palliative care practices. BMJ Support Palliat Care 4(1):68–76
Heese O, Vogeler E, Martens T, Schnell O, Tonn J-C, Simon M et al (2013) End-of-life caregivers’ perception of medical and psychological support during the final weeks of glioma patients: a questionnaire-based survey. Neuro-Oncol 15(9):1251–1256
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(1):39–43
Laws ER, Parney IF, Huang W, Anderson F, Morris AM, Asher A et al (2003) Survival following surgery and prognostic factors for recently diagnosed malignant glioma: data from the glioma outcomes project. J Neurosurg 99(3):467–473
Tanaka S, Meyer FB, Buckner JC, Uhm JH, Yan ES, Parney IF (2013) Presentation, management, and outcome of newly diagnosed glioblastoma in elderly patients: clinical article. J Neurosurg 118(4):786–798
Chang SM, Parney IF, Huang W, Anderson FA Jr, Asher AL, Bernstein M et al (2005) Patterns of care for adults with newly diagnosed malignant glioma. JAMA J Am Med Assoc 293(5):557–564
Filippini G, Falcone C, Boiardi A, Broggi G, Bruzzone MG, Caldiroli D et al (2008) Prognostic factors for survival in 676 consecutive patients with newly diagnosed primary glioblastoma. Neuro-Oncol 10(1):79–87
Bauchet L, Mathieu-Daudé H, Fabbro-Peray P, Rigau V, Fabbro M, Chinot O et al (2010) Oncological patterns of care and outcome for 952 patients with newly diagnosed glioblastoma in 2004. Neuro-Oncol 12(7):725–735
Johnson DR, Sawyer AM, Meyers CA, O’Neill BP, Wefel JS (2012) Early measures of cognitive function predict survival in patients with newly diagnosed glioblastoma. Neuro-Oncol 14(6):808–816
Sizoo EM, Braam L, Postma TJ, Pasman HRW, Heimans JJ, Klein M et al (2010) Symptoms and problems in the end-of-life phase of high-grade glioma patients. Neuro-Oncol 12(11):1162–1166
Sundararajan V, Bohensky MA, Moore G, Brand CA, Lethborg C, Gold M et al (2014) Mapping the patterns of care, the receipt of palliative care and the site of death for patients with malignant glioma. J Neurooncol 116(1):119–126
Central Nervous System Tumour Group Brain Tumour Patient Pathway. Victoria: WCMICS: Western and Central http://www.wcmics.org/docs/CNS-BrainTumourPatientPathwayProjectReport.pdf. Accessed 23 Mar 2014
Sundararajan V, Henderson T, Perry C, Muggivan A, Quan H, Ghali WA (2004) New ICD-10 version of the Charlson comorbidity index predicted in-hospital mortality. J Clin Epidemiol 57(12):1288–1294
Henderson T, Shepheard J, Sundararajan V (2006) Quality of diagnosis and procedure coding in ICD-10 administrative data. Med Care 44(11):1011–1019 Epub 2006/10/26
Johnson C, Girgis A, Paul C, Currow DC (2008) Cancer specialists’ palliative care referral practices and perceptions: results of a national survey. Palliat Med 22(1):51–57
Brickner L, Scannell K, Marquet S, Ackerson L (2004) Barriers to hospice care and referrals: survey of physicians’ knowledge, attitudes, and perceptions in a health maintenance organization. J Palliat Med 7(3):411–418
Broom A, Kirby E, Good P, Wootton J, Adams J (2012) Specialists’ experiences and perspectives on the timing of referral to palliative care: a qualitative study. J Palliat Med 15(11):1248–1253
Fallowfield L, Jenkins V, Beveridge H (2002) Truth may hurt but deceit hurts more: communication in palliative care. Palliat Med 16(4):297–303
Quill TE (2000) Initiating end-of-life discussions with seriously ill patients. JAMA J Am Med Assoc 284(19):2502–2507
Zhang B, Wright AA, Huskamp HA, Nilsson ME, Maciejewski ML, Earle CC et al (2009) Health care costs in the last week of life: associations with end-of-life conversations. Arch Intern Med 169(5):480
Philip J, Collins A, Brand CA, Moore G, Lethborg C, Sundararajan V et al (2014) “I’m just waiting…”: an exploration of the experience of living and dying with primary malignant glioma. Support Care Cancer 22(2):389–397
Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA et al (2010) Early palliative care for patients with metastatic non–small-cell lung cancer. N Engl J Med 363(8):733–742
Higginson IJ, Evans CJ (2010) What is the evidence that palliative care teams improve outcomes for cancer patients and their families? Cancer J 16(5):423–435
Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L, Tulsky JA (2000) Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA J Am Med Assoc 284(19):2476–2482
Acknowledgments
This study was supported by translational cancer research Grant [EO109_29] from the Victorian Cancer Agency of the Victorian State Government Department of Health. The authors would like to acknowledge the time and expertise of the study advisory group who ensured the methodology, results, and interpretation of findings were clinically grounded: Ros Aylot, Amanda Bolleter, Dr Dianne Clifton, Dr Jeremy Couper, Dr Michael Dally, Prof Mark Rosenthal, Dr Peter Sherwen, and Jane Staker.
Conflict of interest
The authors declare that they have no conflict of interest.
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Collins, A., Sundararajan, V., Brand, C.A. et al. Clinical presentation and patterns of care for short-term survivors of malignant glioma. J Neurooncol 119, 333–341 (2014). https://doi.org/10.1007/s11060-014-1483-5
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s11060-014-1483-5