Quality of Life Research at National Brain Tumor Society
National Brain Tumor Society (NBTS) has been advancing research to improve quality of life for brain tumor patients and care partners for many years. In 2010, NBTS hosted a large gathering of patients, researchers, care partners and advocates to take stock of the human needs of those living with a brain tumor. In 2014, NBTS, as part of the Jumpstarting Brain Tumor Drug Development Coalition, convened the first ever workshop with the U.S. Food and Drug Administration on the subject of clinical outcomes assessments in brain tumor clinical trials focusing on the means of measuring quality of life outcomes of investigational treatments. The workshop led to a state of the field paper published in Neuro-Oncology.
Separately from NBTS, in 2017, researchers Liz Salmi, brain tumor patient, and Bethany Kwan, PhD, MSPH, care partner, established the Brain Cancer Quality of Life Collaborative (BCQoLC).
National Brain Tumor Society believes that the quest for cures must include the same drive for quality of life. In 2022, NBTS launched a new effort to develop capacity for quality of life research that will lead to new grant funding, data collection, and collaborations.
In 2022, NBTS convened, in collaboration with Liz Salmi and Bethany Kwan, a stakeholder advisory group with over 30 people including a mix of patients, care partners, clinicians, and researchers with diverse backgrounds and diagnoses, which has met regularly. Additionally, the advisory group plus additional stakeholders will hold two in-person roundtable meetings in 2023 to help in the development of a research agenda focused on quality of life.
NBTS seeks to involve patient partners and stakeholders as active and engaged members in planning and developing a brain tumor QoL research agenda.
NBTS aims to advance QoL research for people facing brain tumors, convene and engage key stakeholders around priority QoL issues, and improve patient-centered and comparative effectiveness research and clinical practice as it pertains to brain tumor QoL. This work will foster strong patient and community partnerships to support future QoL research that uses innovative approaches for patient-partner engagement.
Key activities of this project include:
- Forming a stakeholder advisory group with at least half of all members identifying as patients or care partners
- Hosting one roundtable meeting annually with a broader range of brain tumor community stakeholders
- Establishing a patient-centered brain tumor QoL research agenda
Primary short-term output of the initial phase of the NBTS QoL stakeholder input process will be a QoL research agenda, established in collaboration with patients and care partners serving on the stakeholder advisory group. Medium-term, the project team expects the full launch of a designated program within NBTS for efforts to advance patient-centered brain tumor QoL research. Ultimately, the long-term goal is to create a grant making structure and issue awards to researchers.
This program was funded through a Patient Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award (EACB-23261).