Despite high palliative care needs and typically incurable diagnoses with no significant new treatments in 30 years, brain cancer patients are not routinely referred for early palliative care. This may be due to complexities in palliative care needs, inconsistent care models, and misconceptions about palliative care.
failure ratio for brain tumor treatments over the last two decades
months: The average life span after glioblastoma diagnosis
of people with brain cancer receive 21 days of hospice or less before dying
The experience of palliative care for patients with brain cancer and their families is frequently suboptimal, with many patients relying on family members to be their best advocates—a role for which those family members may not be suited or may not want to fulfill.
In 2018-2020 we will establish a network of participating sites for a brain cancer/palliative care pragmatic comparative effectiveness trial.
materials for pragmatic trials
We will co-design and test materials and messaging to promote effective recruitment of patients, care partners and clinicians, and ensure trial rigor.