Quality of Life Research

Quality of life (QoL) is a major concern among people living with a malignant or non-malignant brain tumor as well as family and other care partners who experience their own QoL needs as they care for their loved ones.

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.

Brain Tumor Quality of Life Components

The disease journey is always changing, and quality of life factors can vary per person and are defined by the individual.

​​Some examples include:

• Physical Health – interference of your basic human functions that can impact how you perform daily tasks. This can include fatigue, weakness, difficulty walking, poor sleep, nausea, vomiting, constipation, diarrhea, pain, headaches, and seizures. This can also include impairments to your cognitive functions, or mental process of learning, understanding, and communicating.

• Psychological Health – changes to your thoughts and feelings that can impact your personality, mood, and behavior. This can include how much you experience positive feelings of enjoyment of the good things in life, as well as negative feelings. This can also include your ability to think, learn, remember things and concentrate, your self-esteem and view of your body image, appearance, or changes to your physical health.

• Level of Independence – level of dependency on others. This can include needing assistance getting around due to mobility changes, performing usual daily activities, taking medications and treatments, and help with work.

• Social Relationships – impact on your relationships with others. This can include personal or social relationships and feeling the companionship, love, and support you desire. This can also include intimacy and sexual activity, dependence on others, or social isolation.

• Environmental Factors – impact of your surroundings or conditions. This can include your physical safety and security, home and physical environment, financial resources, availability to quality health and social care, availability to resources, and ability to participate in fun and relaxing activities.

• Spiritual Well-Being – thoughts on how you view the world and define your place in it. This can include your feelings and beliefs, including your sense of peace, purpose, connection to others, and beliefs about the meaning of life.

Keep in mind, quality of life factors vary based on the individual’s experiences, characteristics, tumor type, treatment, and other individual health factors and resources. Speak to your clinician about any questions you have, as there are many resources available to help you as you navigate your disease journey.

Quality of Life Research at National Brain Tumor Society

National Brain Tumor Society (NBTS) has been advancing research to improve quality of life for brain tumor patients and care partners for many years. In 2010, NBTS hosted a large gathering of patients, researchers, care partners and advocates to take stock of the human needs of those living with a brain tumor.  In 2014, NBTS, as part of the Jumpstarting Brain Tumor Drug Development Coalition, convened the first ever workshop with the U.S. Food and Drug Administration on the subject of clinical outcomes assessments in brain tumor clinical trials focusing on the means of measuring quality of life outcomes of investigational treatments. The workshop led to a state of the field paper published in Neuro-Oncology. 

Separately from NBTS, in 2017, researchers Liz Salmi, brain tumor patient, and Bethany Kwan, PhD, MSPH, care partner, established the Brain Cancer Quality of Life Collaborative (BCQoLC).  

National Brain Tumor Society  believes that the quest for cures must include the same drive for quality of life. In 2022, NBTS launched a new effort to develop capacity for quality of life research that will lead to new grant funding, data collection, and collaborations. 

In 2022, NBTS convened, in collaboration with Liz Salmi and Bethany Kwan, a stakeholder advisory group with over 30 people including a mix of patients, care partners, clinicians, and researchers with diverse backgrounds and diagnoses, which has met regularly. Additionally, the advisory group plus additional stakeholders will hold two in-person roundtable meetings in 2023 to help in the development of a research agenda focused on quality of life. 

NBTS seeks to involve patient partners and stakeholders as active and engaged members in planning and developing a brain tumor 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. This work will foster strong patient and community partnerships to support future QoL research that uses innovative approaches for patient-partner engagement. 

 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

Primary short-term output of the initial phase of the NBTS QoL stakeholder input process will be a QoL research agenda, established in collaboration with patients and care partners serving on the stakeholder advisory group. Medium-term, the project team expects the full launch of a designated program within NBTS for efforts to advance patient-centered brain tumor QoL research. Ultimately, the long-term goal is to create a grant making structure and issue awards to researchers.

This program was funded through a Patient Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award (EACB-23261).

Stakeholder Advisory Group Members

Leaders
Danielle Leach, Project Lead
Kristin Odom, Project Manager
Dr. Bethany Kwan, Member Leader
Liz Salmi, Member Leader

Members
Dr. Terri Armstrong, Marianne Bergman, Allison Bishof, Dr. David Cachia, Dr. Susan Chang, Lisa Firestone, Nestelynn Gay, Dr. Debbie LaFond, Dr. Heather Leeper, Lisa Lenrow, Tito Mendoza, Dr. Byram Ozer, Karen Paz, Jyothi Raghavan, Eric Robinson, Dr. Akanksha Sharma, Dr. Tresa Spencer, Dr. Macy Stockdill, Dennis Sullivan, Dr. Jennie Taylor, Karen Turner, Susan Weiss

NBTS Staff
David Arons, Tori Best, Rachael Kittleson, Mary Lovely, Kirk Tanner, Kimberly Wallgren

Quality of Life – NCI Thesaurus 
The World Health Organization Quality of Life (WHOQOL)

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