The Brain Cancer Quality of Life Collaborative (BCQOLC) is exploring better quality of life standards for people living with glioblastoma and other high-grade brain tumors.
In October 2017, the Collaborative was awarded $50,000 from the Patient-Centered Outcomes Research Institute (PCORI) as part of their Pipeline to Proposals Tier A Pre-Engagement/Community Projects initiative.
"Families want to spend time building memories, not navigating the healthcare system."
The purpose of the Pipeline to Proposal (P2P) Awards program is to help people form new collaborations with the goal of developing proposals for research with sound scientific rigor and robust patient engagement. PCORI is interested in research teams that include patients, caregivers, clinicians, and other healthcare stakeholders, as well as researchers.
The P2P program has two tiers:
- Tier A is designed to support the development of research partnerships as they identify a comparative clinical effectiveness research (CER) question (or series of questions) that is important to patients, researchers, and other members of the healthcare community.
- Tier B is designed to help research partnerships refine their CER questions and prepare an application for research funding.
With support from PCORI, the Brain Cancer Quality of Life Collaborative is convening a group of diverse stakeholders who will identify a research question impacting the quality of life for people facing brain cancer.
Why research quality of life in brain cancer?
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. Families want to spend time building memories, not navigating the healthcare system.
Optimizing palliative care may require improved coordination with the patient’s entire care team over the full course of illness—rather than the more typical episodic, symptom-based approaches that are reactive rather than proactive.
Who is part of the Brain Cancer Quality of Life Collaborative?
Stakeholders in the Brain Cancer Quality of Life Collaborative include patients, family members, social workers, nurses, neuro-oncologists, palliative care experts, researchers and others, each with a unique perspective on how best to offer palliative care.