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READ MOREQuality of life (QoL) is a major concern among people living with brain tumors as well as their family and other care partners.
Quality of life may be defined as an individual’s sense of well-being and ability to enjoy and participate in life. QoL includes physical and psychological health, level of independence, social relationships, environmental factors, and spiritual well-being. QoL is defined by the individual and can evolve over time.
National Brain Tumor Society believes that the quest for cures must include the same drive for quality of life and has worked with the community to develop a Quality of Life Research Agenda to guide future research efforts in this area, including the launch of the first NBTS Quality of Life Research Grant.
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. In order to achieve these goals, NBTS has partnered with patients, caregivers, researchers, and clinicians to develop the first-ever Quality of Life Research Agenda.
To develop the agenda, NBTS first conducted a landscape analysis of existing data and Quality of Life research in neuro-oncology in 2022. NBTS then began a robust stakeholder input process – including creating a stakeholder advisory group (below) and hosting multiple roundtable meetings – to determine how to fill in gaps identified in the landscape analysis and develop a new QoL Research Agenda. This work builds upon earlier efforts by NBTS and key opinion leaders.
This effort was funded through a Patient-Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award (EACB-23261).
In addition to guiding the field to fill the critical gaps in quality of life research for the brain tumor community, the agenda has also inspired the launch of the first NBTS Quality of Life Research Grant, which establishes a scalable grant-making structure to issue awards to qualified researchers. NBTS plans to launch the first funded project in early 2025.
This effort was funded through a Patient-Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award (EACB-23261).
* Speak to your clinician about any questions you have, as there are many resources available to help you as you navigate living with a brain tumor.
National Brain Tumor Society (NBTS) is pleased to announce a request for proposals (RFP) for quality of life (QoL) projects in 2025-2026. This award will support innovative patient-centered research designed to address critical problems or barriers to progress in the field of brain tumor QoL.