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

Sizoo, Eefje M.; Pasman, H. Roeline W.; Dirven, Linda; Marosi, Christine; Grisold, Wolfgang; Stockhammer, Günther; Egeter, Jonas; Grant, Robin; Chang, Susan M.; Heimans, Jan J.; Deliens, Luc; Reijneveld, Jaap C.; Taphoorn, Martin J.B.

doi:10.1007/s00520-013-2088-9

Cited by 69 publications

(59 citation statements)

References 48 publications

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“…Substantial loss of independence commonly occurs with the progression of brain cancer 29 . Studies have shown that brain cancer produces a high degree of symptom burden for patients and caregivers 36,37 , with caregivers reporting poor physical and emotional health, career sacrifices, monetary losses, and immense strain 36,37 . Currently, the provision of support and coping therapy for informal carers is lacking, and that lack in turn contributes to a worsening of their stresses 34,36,38,39 .…”

Section: Discussionmentioning

confidence: 99%

The Views of Patients with Brain Cancer about Palliative Care: A Qualitative Study

et al. 2017

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Section: Discussionmentioning

confidence: 99%

The Views of Patients with Brain Cancer about Palliative Care: A Qualitative Study

et al. 2017

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“…The combination of motor dysfunction, seizures, cognitive deficits and, finally, loss of consciousness, together with gradual impairments in communication and loss of independence in HGG patients differs from other types of cancer and necessitates multidimensional and targeted care in the EOL phase of these patients [3,4,[9][10][11].…”

Section: Introductionmentioning

confidence: 99%

“…Although the length of the EOL phase in individual cases ranges from days to weeks prior to death, in our definition, it starts when further tumor directed treatment is no longer an option, which generally is no earlier than 3 months (mo) before death. During this phase, where symptoms further deteriorate and disability increases, care is primarily aimed at optimizing quality of life [3][4][5][6].…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2014

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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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“…Currently, no definition of the EOL phase exist, therefore, in this guideline we refer to the EOL phase as the last three months of life. 4 Given the growing awareness for PC in glioma patients and despite the limited evidence from clinical studies on PC, and more specifically on PC in the EOL phase in glioma, a systematic literature review was performed by the European Association of Neuro-Oncology (EANO) palliative care task force to identify all relevant literature on PC in primary brain tumours.…”

Section: Introductionmentioning

confidence: 99%

European Association for Neuro-Oncology (EANO) guidelines for palliative care in adults with glioma

Pace¹,

Dirven

Koekkoek

et al. 2017

The Lancet Oncology

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Patients with glioma present with complex palliative care needs throughout their disease trajectory. The life-limiting nature of gliomas and the presence of specific symptoms related to neurological deterioration necessitate an appropriate and early palliative care approach. The multidisciplinary palliative care task force of the European Association of Neuro-Oncology did a systematic review of the available scientific literature to formulate the best possible evidence-based recommendations for the palliative care of adult patients with glioma, with the aim to reduce symptom burden and improve the quality of life of patients and their caregivers, particularly in the end-of-life phase. When recommendations could not be made because of the scarcity of evidence, the task force either used evidence from studies of patients with systemic cancer or formulated expert opinion. Areas of palliative care that currently lack evidence and thus deserve attention for further research are fatigue, disorders of behaviour and mood, interventions for the needs of caregivers, and timing of advance care planning.

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

Cited by 69 publications

References 48 publications

The Views of Patients with Brain Cancer about Palliative Care: A Qualitative Study

The Views of Patients with Brain Cancer about Palliative Care: A Qualitative Study

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

European Association for Neuro-Oncology (EANO) guidelines for palliative care in adults with glioma

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