Abstract
The aim of this study was to review the literature on end-of-life symptoms and end-of-life care of adult patients with high-grade glioma (HGG). Despite aggressive treatment, the survival of HGG patients is limited. Symptom management is paramount to maintain maximum quality of life. The goal of this review is to identify the symptoms and the potential needs of brain tumor patients and their caretakers at the end of life. A systematic literature search in PubMed and Cochrane databases was performed for the years 1946 through August 6th, 2013. A total of 6,196 article citations were identified. Based on predefined criteria, 32 articles were retained for detailed examination. Of these 32 articles, only 7 focused on end-of-life symptoms and interventions. All 7 studies were retrospective and focused on inpatients (3), outpatients (2) or both (2). All but one study involved formal hospice. Drowsiness and loss of consciousness was the most common symptom (1–90 %). Poor communication (64 and 90 %), focal neurological deficits (3–62 %), seizures (3–56 %), dysphagia (7–85 %) and headaches (4–62 %) were also frequent. Only 4 studies reported on palliative interventions. Our systematic review shows that HGG patients in the end-of-life phase have a consistently high symptom burden especially during the last days of life. There is no prospective or conclusive literature describing end-of-life symptom management in HGG patients. Prospective research will be needed to further define symptoms and management in the end-of-life phase.
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Chakrabarti I, Cockburn M, Cozen W, Wang YP, Preston-Martin S (2005) A population-based description of glioblastoma multiforme in Los Angeles County, 1974-1999. Cancer 104:2798–2806
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
Wen PY, Kesari S (2008) Malignant gliomas in adults. N Engl J Med 359:492–507
Prados MD, Seiferheld W, Sandler HM, Buckner JC, Phillips T, Schultz C, Urtasun R, Davis R, Gutin P, Cascino TL, Greenberg HS, Curran WJ Jr (2004) Phase III randomized study of radiotherapy plus procarbazine, lomustine, and vincristine with or without BUdR for treatment of anaplastic astrocytoma: final report of RTOG 9404. Int J Radiat Oncol Biol Phys 58:1147–1152
van den Bent MJ, Carpentier AF, Brandes AA, Sanson M, Taphoorn MJ, Bernsen HJ, Frenay M, Tijssen CC, Grisold W, Sipos L, Haaxma-Reiche H, Kros JM, van Kouwenhoven MC, Vecht CJ, Allgeier A, Lacombe D, Gorlia T (2006) Adjuvant procarbazine, lomustine, and vincristine improves progression-free survival but not overall survival in newly diagnosed anaplastic oligodendrogliomas and oligoastrocytomas: a randomized European Organisation for Research and Treatment of Cancer phase III trial. J Clin Oncol 24:2715–2722
Moher D, Liberati A, Tetzlaff J, Altman DG (2009) Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. PLoS Med 6:e1000097
Moore G, Collins A, Brand C, Gold M, Lethborg C, Murphy M, Sundararajan V, Philip J (2013) Palliative and supportive care needs of patients with high-grade glioma and their carers: a systematic review of qualitative literature. Patient Educ Couns 91:141–153
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
Lipsman N, Skanda A, Kimmelman J, Bernstein M (2007) The attitudes of brain cancer patients and their caregivers towards death and dying: a qualitative study. BMC Palliat Care 6:7
Sizoo EM, Braam L, Postma TJ, Pasman HRW, Heimans JJ, Klein M, Reijneveld JC, Taphoorn MJB (2010) Symptoms and problems in the end-of-life phase of high-grade glioma patients. Neuro Oncol 12:1162–1166
Pace A, Di Lorenzo C, Lorenzo CD, Guariglia L, Jandolo B, Carapella CM, Pompili A (2009) End of life issues in brain tumor patients. J Neuro oncol 91:39–43
Pace A, Villani V, Di Lorenzo C, Guariglia L, Maschio M, Pompili A, Carapella CM (2013) Epilepsy in the end-of-life phase in patients with high-grade gliomas. J Neuro oncol 111:83–86
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
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
Bausewein C, Hau P, Borasio GDI, Voltz R (2003) How do patients with primary brain tumours die? Palliat Med 17:558–559
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
Gofton TE, Graber J, Carver A (2012) Identifying the palliative care needs of patients living with cerebral tumors and metastases: a retrospective analysis. J Neuro oncol 108:527–534
Stewart-Amidei C (2005) Managing symptoms and side effects during brain tumor illness. Expert Rev Neurother 5:71–76
Ryan R, Booth S, Price S (2012) Corticosteroid-use in primary and secondary brain tumour patients: a review. J Neuro oncol 106:449–459
Anderson GD, Saneto RP (2012) Current oral and non-oral routes of antiepileptic drug delivery. Adv Drug Deliv Rev 64:911–918
Armstrong T, Hancock C, Gilbert M (2000) Symptom management of the patient with a brain tumor at the end of life. Oncol Nurs Forum 27:616
Nakken KO, Lossius MI (2011) Buccal midazolam or rectal diazepam for treatment of residential adult patients with serial seizures or status epilepticus. Acta Neurol Scand 124:99–103
Cohen MZ, Torres-Vigil I, Burbach BE, de la Rosa A, Bruera E (2012) The meaning of parenteral hydration to family caregivers and patients with advanced cancer receiving hospice care. J Pain Symptom Manag 43:855–865
Lo B, Rubenfeld G (2005) Palliative sedation in dying patients: “we turn to it when everything else hasn’t worked”. JAMA 294:1810–1816
Earle CC, Ayanian JZ (2006) Looking back from death: the value of retrospective studies of end-of-life care. J Clin Oncol 24:838–840
Oberndorfer S, Lahrmann H (2006) Supportive care and palliation in patients with malignant gliomas. Wien Med Wochenschr 156:364–368
Teunissen SC, Wesker W, Kruitwagen C, de Haes HC, Voest EE, de Graeff A (2007) Symptom prevalence in patients with incurable cancer: a systematic review. J Pain Symptom Manag 34:94–104
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
Von Roenn JH, von Gunten CF (2003) Setting goals to maintain hope. J Clin Oncol 21:570–574
Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, Dahlin CM, Blinderman CD, Jacobsen J, Pirl WF, Billings JA, Lynch TJ (2010) Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 363:733–742
Yoong J, Park ER, Greer JA, Jackson VA, Gallagher ER, Pirl WF, Back AL, Temel JS (2013) Early palliative care in advanced lung cancer: a qualitative study. JAMA Intern Med 173:283–290
Detering KM, Hancock AD, Reade MC, Silvester W (2010) The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. Br Med J 340:c1345
Sizoo EM, Taphoorn MJ, Uitdehaag B, Heimans JJ, Deliens L, Reijneveld JC, Pasman HR (2013) The end-of-life phase of high-grade glioma patients: dying with dignity? Oncologist 18:198–203
Sundararajan V, Bohensky MA, Moore G, Brand CA, Lethborg C, Gold M, Murphy MA, Collins A, Philip J (2014) Mapping the patterns of care, the receipt of palliative care and the site of death for patients with malignant glioma. J Neurooncol 116:119–126. doi:10.1007/s11060-013-1263-7
Sizoo EM, Pasman HRW, Buttolo J, Heimans JJ, Klein M, Deliens L, Reijneveld JC, Taphoorn MJB (2012) Decision-making in the end-of-life phase of high-grade glioma patients. Eur J Cancer 48:226–232
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This work was supported by the Department of Neurosurgery and the Hermelin Brain Tumor Center of Henry Ford Health System.
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Walbert, T., Khan, M. End-of-life symptoms and care in patients with primary malignant brain tumors: a systematic literature review. J Neurooncol 117, 217–224 (2014). https://doi.org/10.1007/s11060-014-1393-6
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DOI: https://doi.org/10.1007/s11060-014-1393-6