Background: An estimated 700,000 people in the United States live with a primary brain tumor. The heterogeneous and complex nature of these tumors results in a diverse spectrum of experiences and related quality of life (QoL) needs. For brain tumor patients, this encompasses physical, psychosocial, and existential concerns ranging from headaches and nausea to changes in identity and loss of autonomy. Simultaneously, care partners of brain tumor patients experience their own QoL needs as they accompany their loved one through the brain tumor experience.
Proposed Solution to the Problem: To address the lack of patient-centered QoL research specific to the brain tumor space, the National Brain Tumor Society (NBTS) QoL Institute through this project will seek to improve wellness and palliation so patients and their care partners can not only survive but thrive. The Institute will be a designated program within NBTS, part of the organization’s overall mission delivery dedicated to supporting the brain tumor community. The project team believes that the quest for cures must include the same drive for QoL—with patients and care partners as drivers of a QoL research agenda that truly meets their needs—and seeks to involve patient partners and stakeholders as active and engaged members in planning and developing a brain tumor QoL research agenda.
Objectives: Overarching goals of the Institute are 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. The Institute will foster strong patient and community partnerships to support future QoL research that uses innovative approaches for patient-partner engagement.
Activities: 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
Projected Outcomes and Outputs: Primary short-term output of the initial phase of the NBTS QoL Institute will be a QoL research agenda, established in collaboration with patients and care partners serving on the Institute’s stakeholder advisory group. Medium-term, the project team expects the full launch of the Institute as a designated program within NBTS for sustained efforts to advance patient-centered brain tumor QoL research. Ultimately, the long-term goal of the Institute is to create a formalized grant making structure and issue awards to researchers based on the priorities outlined in the QoL research agenda.
Patient and Stakeholder Engagement Plan: Patients, care partners, and other stakeholders within the brain tumor community will serve as members of the Institute’s stakeholder advisory group, leading the development of a QoL research agenda that is driven by patient-identified priorities. Stakeholder advisory group members will be identified through NBTS community networks and collaborators within the Brain Cancer Quality of Life Collaborative (BCQoLC). Stakeholders will also participate in an annual roundtable meeting, with participants identified through the same channels.
Project Collaborators: BCQoLC will be a key collaborator, with members serving on the Institute’s stakeholder advisory group and as roundtable meeting participants.