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Quality of Life Research

Quality 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’s 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. 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).

NBTS’s QoL Research Grants

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).

History of Quality of Life Research at National Brain Tumor Society

  • 2010

     NBTS hosts meeting of patients, care partners, researchers, and advocates to take stock of QoL needs of those living with a brain tumor

  • 2013

     NBTS forms Jumpstarting Brain Tumor Drug Development Coalition (JBTDDC) with other brain tumor advocacy organizations, and includes a focus on QoL

  • 2014

    NBTS, through the JBTDDC, convenes first-ever workshop with U.S. FDA on the subject of including measures of QoL-related outcomes (called Clinical Outcome Assessments) in brain tumor clinical trials

  • 2016

    Two papers resulting from the JBTDDC meeting on Clinical Outcome Assessments are published, one by leaders from NBTS and the research and clinical community in the journal Neuro-Oncology and the other by leaders from the FDA in the journal Neuro-Oncology Practice

  • 2017

    Researchers Liz Salmi (a patient with a brain tumor), and Bethany Kwan, PhD, MSPH (a care partner) establish the Brain Cancer Quality of Life Collaborative (BCQoLC)

  • 2022

    NBTS launches a new effort to develop capacity for QoL research that will lead to new grant funding, data collection, and collaborations and – together with Liz Salmi and Bethany Kwan – held a stakeholder advisory group with over 30 people, including a mix of patients, care partners, clinicians, and researchers with diverse backgrounds and diagnoses to meet regularly to discuss QoL research

  • 2023

    The advisory group plus additional stakeholders hold two in-person roundtable meetings to help in the development of a research agenda focused on QoL

  • 2024

    Members of the advisory group publish a paper in the journal Neuro-Oncology Practice on research priorities and essential elements of palliative care services for people facing malignant brain tumors

  • 2024

    NBTS launches first Request for Proposals for brain tumor QoL research grants

Helpful Resources

* 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.

Additional Quality of Life Resources

Requests for Proposals

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.

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