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.

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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).

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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 announced the first two QoL Research Grants in early 2025, with support in part from Stachestrong.

Current Grants

Ashlee R. Loughan, PhD, and Sarah Ellen Braun, PhD, Virginia Commonwealth University (VCU)

Drs. Loughan and Braun will study the effects of a newly-developed intervention, FearLess in Neuro-Oncology, aimed at reducing fear of recurrence or progression in patients with brain tumors and their caregivers.

Together, Drs. Loughan and Braun have developed an intervention, calledFearLess in Neuro-Oncology, an extensive manual – developed with the input of clinician, patient, and caregiver stakeholders – to address the distress many experience related to the fear of their brain tumor coming back or growing. Dr. Braun has found that this fear is particularly high in both patients with primary malignant brain tumors and their caregivers, across the disease trajectory, and is associated with both individual and partner distress, among other negative outcomes.

With their NBTS Quality of Life Research grant, Drs. Loughan and Braun will conduct a trial enrolling 16 sets of adult brain tumor patients with their primary, informal caregivers. These 16 sets will be randomly split into two groups. The first group will participate in FearLess immediately. The other half will serve as the control group during a waiting period and will receive FearLess after the first group has finished. The researchers will assess the feasibility of recruiting, enrolling, and collecting the data to determine if the FearLess intervention can reduce fear and improve coping.

*If you’re interested in participating in the FearLess in Neuro-Oncology trial, Drs. Loughan and Braun are seeking patients and/or caregivers to participate either individually, or as a dyad. Compensation is available. If you are interested in participating, call or email to see if you are eligible: (804) 628-6799 or livenow@vcu.edu.

Laurie Minns, PhD, University of North Carolina Wilmington (UNCW)

Dr. Minns seeks to provide resources to caregivers of people with brain tumors by adapting the broad PATH© (Preparedness Assessment for the Transition Home) tool specifically for caring for patients with high-grade brain tumors.

With her NBTS Quality of Life Research grant, Dr. Minns will work with Drs. Barbara J. Lutz and Hayley Estrem of the UNCW School of Nursing, along with advisory board members from other research institutions and GBM support groups. Dr. Lutz collaborated with Dr. Michelle Camicia to develop the original PATH instrument, which the team will now seek to adapt specifically for the brain tumor community. PATH was originally created as a readiness assessment for stroke caregivers that screens for an individual’s capacity, commitment, and resources to take on the challenges of caregiving for difficult diseases in the home. Dr. Minns and her team will now work with caregivers of patients with high-grade brain tumors to develop new questions and assessments specific to caring for this population.

*If you’re interested in participating in the PATH-BT study, Dr. Minns is seeking caregivers of patients with high-grade glioma for recruitment. Interested caregivers can share their information with the team, here.

History of Quality of Life Research at National Brain Tumor Society

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Helpful Resources

• NBTS QoL Research Agenda
  
• Quality of Life – NCI Thesaurus 
  
• The World Health Organization Quality of Life (WHOQOL)
  
• Report of the Jumpstarting Brain Tumor Drug Development Coalition and FDA clinical trials clinical outcome assessment endpoints workshopClinical outcome assessments in neuro-oncology: a regulatory perspective

* 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.

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