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. 2020 Oct 13;10(10):723. doi: 10.3390/brainsci10100723

Table 4.

Summary of the literature on unmet palliative care needs among patients with high-grade glioma.

Author Country Number of Centers Study Type #Of Participants Gaps Identified
Pace (2017) [13] N/A N/A Systematic Review and Expert Opinion 223 articles on palliative care needs and management of glioma
  • Overall limited evidence on palliative care delivery for glioma

  • Need to study fatigue, behavioral symptoms, caregiver needs, and ACP

Halkett (2018) [36] Australia 4 Prospective cohort 118 caregivers of HGG patients
  • Caregivers have high levels of unmet supportive care needs throughout the disease trajectory

  • Over 25% of caregivers reported a lack of information about prognosis as important at all stages

Sizoo (2012) [27] Netherlands 3 Cross-sectional survey 101 providers
50 relatives of decedents with HGG
• Physicians are often unaware of patients’ end-of-life preferences
Gofton (2012)40 USA 1 Retrospective data analysis 101 deceased HGG patients
  • 15% of patients had no documented end-of-life discussions

  • 23% had no health care proxy

  • 35% had no DNR order

Hemminger (2017) [43] USA 1 Retrospective cohort 117 decedents with GBM • Patients received late ACP documentation and minimal early palliative care
Diamond (2017) [46] USA 1 Mixed methods (prognostic awareness assessment tool and semi-structured interviews) 50 patients with HGG with 32 matched caregivers
  • 20% of patients had no prognostic awareness

  • 40% of patients had limited prognostic awareness

  • 42% of patients and 50% of caregivers desired more prognostic information

Sizoo (2014) [49] N/A N/A Systematic Review 17 studies addressing the end-of-life phase for HGG patients • Limited research and no adequate guidelines on end of life care for HGG patients, including symptom management, ACP, and organization of care
Collins (2014) [55] Australia 4 Retrospective cohort 1160 decedents with PMBT • Under-utilization of palliative care in patients who survived a first hospital admission but died within 120 days
Forst (2017) [56] USA 1 Retrospective analysis 12,437 decedents with malignant glioma • Patients often referred late (<7 days before death) to hospice
Mehta (2018) [61] USA 17 Cross-sectional survey 17 neuro-oncology fellowship program directors • No consistent palliative care education for neuro-oncology fellows
Philip (2014) [62] Australia 2 Qualitative interviews 10 patients with HGG • Patients perceived providers as focused on “here and now,” lacking openness about the future, reluctant to discuss palliative care

HGG: High-grade glioma; DNR: Do not resuscitate; GBM: Glioblastoma; ACP: Advance care planning; PMBT: Primary malignant brain tumor.