Join NBTS’s campaign to raise awareness about the importance of biomarker testing and clinical trials for patients with brain tumors.
READ MOREPublished on March 17, 2025 in Research, Press Release
Today, the National Brain Tumor Society (NBTS) is announcing its first-ever Quality of Life Research grants, part of a concerted new program aimed at improving the lives of those facing brain tumors, both patients and their caregivers. The new grants, supported in part by Stachestrong, will fund two projects, each for $200,000 over two years.
Ashlee R. Loughan, PhD, and Sarah Ellen Braun, PhD, from Virginia Commonwealth University (VCU), 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. Laurie Minns, PhD, from University of North Carolina Wilmington (UNCW), 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.
“This represents an important milestone in a project that NBTS started years ago through broad brain tumor community participation and funding from the Patient Research Outcomes Research Institute to prioritize research focused on improving the quality of life of people with brain tumors,” said David Arons, president and chief executive officer, National Brain Tumor Society. We’re excited about the potential of each of these projects and the ways in which they could ultimately make life better for people with brain tumors as well as their caregivers.”
Dr. Loughan is the Director of LiveNOW (Neuro-Oncology Wellness) and established the lab at VCU in 2017. Dr. Braun joined as Assistant Director in 2022. LiveNOW is dedicated to the advancement of research to promote both cognitive and psychological wellbeing among those diagnosed with brain tumors. 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.
“Existing treatment options to decrease fear of recurrence or progression in patients with cancer are not entirely translatable to neuro-oncology for a variety of reasons,” said Drs. Loughan and Braun. “FearLess has been developed with guidance from professional and community stakeholders and borrows from mindfulness-based, existential, and cognitive behavioral therapy, incorporating techniques such as mindfulness and compassion meditation, relaxation exercises, the identification of fear and coping patterns, as well as exploring fear narratives. The NBTS QoL Award is the ideal mechanism to test this newly-developed, brain tumor-specific telehealth therapy.”
Dr. Minns is a former care partner of her late spouse who passed away from glioblastoma (GBM), and she has a well-established history of engaging the community of patients and caregivers 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.
“Patients with high-grade brain tumors, such as glioblastoma, face significant challenges in cognitive functioning, communication, physical abilities, and daily activities as their illness progresses,” says Dr. Minns. “They heavily rely on caregivers for support, yet many caregivers feel unprepared for the complex care required. And we know if caregivers are prepared and they know what to expect, then that directly impacts the quality of life of the patient, too. Since PATH has proved a useful tool in other complex disease settings, we’re seeking to work with caregivers to adapt a new PATH-BT, which we will then test to ensure its usability and effectiveness.”
StacheStrong, a non-profit devoted to raising funds and awareness for brain cancer research, provided funding in order to support both research projects.
“As my brother GJ went through 25 months of his GBM diagnosis, there was nothing more important to all of us than his quality of life,” said Colin Gerner, President, CEO and Co-Founder, StacheStrong. “During that time, we saw many ups and downs, and I know he’d be proud that we’re investing in quality of life research to help the next family. StacheStrong aims to provide more tomorrows for families facing brain tumors, and we know firsthand that the quality of those tomorrows is everything.”
About Quality of Life Research at NBTS
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 and hosting multiple roundtable meetings – to determine how to fill 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. 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 is launching the first funded projects in early 2025, detailed below.
About the National Brain Tumor Society
Building on over 30 years of experience, the National Brain Tumor Society (NBTS) unrelentingly invests in, mobilizes, and unites the brain tumor community to discover a cure, deliver effective treatments, and advocate for patients and caregivers. Our focus on defeating brain tumors and improving the quality of patients’ lives is powered by our partnerships across science, health care, policy, and business sectors. We fund treatments-focused research and convene those most critical to curing brain tumors – once and for all. Join us at BrainTumor.org.
TAGGED WITH: brain cancer, brain cancer research, brain tumor research, Research, quality of life