Examining Social Determinants of Health to Improve Brain Tumor Patient Quality of Life
, by Rebecca Zacuto, Neuro-Oncology Branch Communications Fellow
Social determinants of health describe the conditions in which people are born, work, live, learn, and age. They can be grouped into five domains.
A new study explores how non-medical factors influence the neurocognitive and mood-related symptoms that people with brain tumors experience. These factors include gender or sex, education, where people live, and more.
The conditions in which people are born, work, live, learn, and age are known as social determinants of health (SDOH). SDOH influence health inequities and impact health outcomes, such as the mortality and survival of individuals with cancer. Less is known about the relationship between SDOH and the symptoms people with brain tumors experience.
That’s why Macy Stockdill, Ph.D., an iCURE postdoctoral fellow in the lab of Terri Armstrong, Ph.D., at the NCI Center for Cancer Research’s Neuro-Oncology Branch (NOB), aims to explore this difficult but crucial area of research.
“It is a ripe area for us to learn from because patient symptoms are key drivers of patient quality of life,” Dr. Stockdill says. “If certain symptom outcomes are continually correlated with certain SDOH, that is valuable information.” Measuring SDOH allows researchers to spot larger patterns in patient populations.
Dr. Stockdill collaborated with other trainees from Dr. Armstrong’s Patient Outcomes Research Program to publish the first systematic literature review on the relationship between SDOH and brain tumor symptoms. The review examined how SDOH may impact neurocognitive symptoms (the mental processes of learning, understanding, and communicating) and mood-related symptoms (depression, anxiety, and distress or stress).
“The importance of SDOH on population health is well understood, as is the impact on cancer screening,” Dr. Armstrong says. “But it’s only recently becoming the focus of study on survivorship in those with cancer, including central nervous system tumors.”
Tracking Social Determinants of Health in Neuro-Oncology Research
SDOH are not always the focus of clinical studies, but information related to SDOH is often collected as part of the research process. SDOH is an umbrella term, so the NOB research team applied the PROGRESS framework: place of residence, race or ethnicity, occupation, gender or sex, religion, education, socioeconomic status, and social capital (support and resources obtained through a person’s social network). Through their literature search, the researchers identified 48 studies to include in the review. Eleven studies examined neurocognitive symptoms, 33 examined mood-related symptoms, and four examined both types of symptoms. All of them explored the relationship between symptoms and at least one of the PROGRESS criteria.
Dr. Stockdill and her colleagues found most studies that collected SDOH were cross-sectional, exploratory, or descriptive. “These types of studies do not demonstrate cause and effect relationships, but they still provide important clues that point us to future research directions that can lead to more controlled interventions and studies,” Dr. Stockdill says.
The review identified and quantified which SDOH were most frequently examined in the studies. “It’s important to know what researchers are currently tracking in relation to neurocognitive and mood-related symptoms,” Dr. Stockdill explains. “The only way to know what work still needs to be done is if we identify what is currently being done.”
Gender and sex were the most measured SDOH, followed by education. While there was not a clear relationship between symptoms and gender/sex in the review, education was commonly associated with neurocognitive symptoms. “It made intuitive sense that education was commonly measured, given that there is literature showing education level is related to neurocognitive symptoms, like problem solving and memory, among other populations,” Dr. Stockdill says.
Additionally, the researchers found that higher educational attainment was associated with fewer neurocognitive symptoms among patients with brain tumors. Seven studies demonstrated a link between higher educational attainment and better cognitive functioning, such as improved memory after treatment.
Religion was the least measured SDOH. This surprised the research team, because religion and spiritual well-being are key contributors to quality of life. Race was another less measured SDOH in brain tumor symptom research. This may be because a higher proportion of people with malignant brain tumors have Caucasian ancestry. In addition, minority groups are less likely to be enrolled in clinical trials. Researchers also found that, among individuals with meningioma, sustained unemployment was linked to depression more than one year after treatment.
Place of residence can be another important factor related to if and how people access health care. Previous research shows that geographic location is a common barrier to clinical trial participation. But little is known about the relationship between place of residence and mood-related symptoms, such as depression and anxiety. This may be due to the many factors linked to place of residence, such as cultural beliefs, access to care, distance to travel for care, and effect of supportive networks.
Understanding the Bigger Picture to Tailor Care to Patient Needs
This review is a pivotal first step to survey the literature and understand how SDOH may relate to brain tumor symptoms—and how to conduct studies that will accurately capture this data. For example, Dr. Stockdill and her colleagues hope that future research will include the eight SDOH outlined in the PROGRESS criteria and focus on the SDOH that are less commonly measured, such as religion, race or ethnicity, and place of residence.
Researchers should also recruit diverse and representative sample populations, collect data over longer periods of time to reduce study bias, and increase the generalizability of findings. “We should be asking study participants broader survey questions related to SDOH influence on the brain tumor population,” Dr. Stockdill says. “Researchers can then incorporate these factors into their studies according to patients’ values and preferences.”
Dr. Armstrong’s team is already expanding the scope of their work to capture more information about SDOH. Specifically, they amended their Natural History Study, an observational study that collects data from patients to track their disease over time, to include questionnaires that incorporate additional socio-demographic information inclusive of SDOH.
Helping patients live longer, healthier lives is a key motivator for Dr. Stockdill. “I really want to make sure that we include their diverse experiences and their voices,” she says. “Doing this will help us tailor care to better meet their needs.”
