Mission

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Our Mission

The mission of the Brain Cancer Quality of Life Collaborative (BCQoLC) is to engage diverse stakeholders who care for people with brain cancer in the prioritization, design, and conduct of research important to these stakeholders. Our specific goal is to identify, test, and disseminate models of healthcare that support quality of life for these people and their care partners.


The Problem

Brain cancer is a relatively rare but devastating cancer, with a 5-year relative survival rate for the most common primary malignant brain tumor (glioblastoma) of only 5.5%. Patients often experience physical and cognitive decline, and personality and behavior changes. Despite dedicated research there still exists:

  • A 25 to 1 failure ratio for brain tumor treatments over the last two decades,

  • A 15 month average life span after glioblastoma diagnosis, and

  • 97% of people with brain cancer receive 21 days of hospice or less before dying.

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.

There is an evidence gap on comparative effectiveness of neuro-oncology palliative care models (pain/symptom management vs. neuro-cognitive focus), and few strong networks of stakeholders and health systems needed to conduct multi-site trials for this disease. There is a need for trial design as well as messaging acceptable to patients, care partners, neuro-oncologists and palliative medicine specialists.

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“Participation in this collaborative has taught me more about the lived experience of brain cancer than my training and my prior narrow view as an ‘expert’ physician.”

— Michael D. Fratkin, MD, palliative care physician

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Origins 

The Brain Cancer Quality of Life Collaborative (BCQoLC) was established in 2017 after being 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.

The Pipeline to Proposal program is designed to help people form new collaborations with the goal of developing proposals for research with sound scientific rigor and robust patient engagement, and 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.