Within well-intentioned and well-validated health care tools, misfires hide in plain sight. To physician-researchers at Duke University, one such oversight is the Black women who fall through the cracks of a widely used measure of distress in cancer patients that is meant to trigger extra support for patients who need it most.
Researchers found in a recent Cancer study that Black women often don’t surface in systems measuring health-related quality of life (HRQOL) metrics, because the systems aren’t designed to capture distress in a relative way — or within the context of the social determinants of health that might shift among different demographics.
The tool the researchers examined is the National Comprehensive Cancer Network distress thermometer, which assigns a number 0 through 10 to patients. The number is generated from a survey that looks both at the number of stressors a patient is exposed to and their self-reported level of distress in the face of those stressors. If a patient scores at or above a 4, they are flagged as being good candidates for additional clinical resources, such as help with transportation to appointments, financial counseling, psycho-oncology services, and more, depending on the reported stressors.
The thermometer was initially designed for prostate cancer patients at Memorial Sloan Kettering in the 1990s as a way to tease out situational distress — a reasonable and temporary state tied to a cancer diagnosis — from more systemic issues that can affect overall health and resilience, like anxiety and depression. In other words, the thermometer gives doctors a standard way to evaluate whether a patient is experiencing passing distress or deeper mental health concerns. While its use was popularized with prostate cancer patients, over time it has been adapted for use in patients dealing with a variety of diseases, and it has been translated into many languages for use around the world.
And it has a lot going for it. It is an easily implementable tool: The survey is a reasonable length to complete and uses language easy for patients to understand, it lets the patient answer questions on their own without being influenced by the authority imbalance that can exist between a physician and patient, the results can be put into a patient’s electronic medical records easily, and it acts as a safety net for oncologists who, due to rising patient-doctor ratios, are not always intimately familiar with a patient’s living arrangement, family life, employment, and other social factors that can influence health outcomes.
“The distress thermometer provides an opportunity to intervene on modifiable barriers to care, to prevent delays in evaluation, and delays in receiving treatment,” said lead study author Oluwadamilola Fayanju, MD, who is associate professor of surgery and population health sciences in the Duke University School of Medicine and associate director for Disparities and Value in Healthcare with Duke Forge, Durham, North Carolina.
But the double-edged sword of simplicity, she and her coauthors found, is that a certain level of nuance gets lost. Their study shows the median distress thermometer score was 3 for Black women, 4 for White women, and 5 for both Asian/Pacific Islander and Hispanic women, but there was no statistically significant difference among the groups in terms of how many stressors each was exposed to. In other words, Black women may have the same number of stressors in their lives as women of other races, but report lower levels of distress nonetheless, and thus, generate a score below the clinical threshold that triggers the extra support the other groups received.
Dr Fayanju and her coauthors concluded not that Black women don’t feel the effects of their stressors, or don’t require extra clinical support, but that their baseline exposure to stress in everyday life is so high, their self-reported reaction to a cancer diagnosis doesn’t register by the standards of this numerical tool.
“We need to rethink whether the summative score that women are providing really represents in totality the extent of the distress they’re experiencing,” Dr Fayanju said. “If you already have a very stressful life, the addition of a breast cancer diagnosis increases your stress — but as a proportion of the stress you already had, [it] may not be that great relative to someone who may have had, frankly, a very much less challenging existence, and for whom breast cancer diagnosis sends them into a tailspin.”