What the survey and subsequent score fail to grasp, however well-intentioned their design, is that social determinants of health must be evaluated within the context of a patient’s lived experience, not in absolute terms.
In addition to differences in median scores seen across different racial or ethnic groups, the study also revealed a racial disparity in the time it takes for a patient to be evaluated and treated — with Black women experiencing the most delays in evaluation and treatment. Dr Fayanju said what surprised the researchers about this wasn’t so much that there were racial disparities, but that they appeared in the opposite pattern the researchers expected: Women with higher distress thermometer scores showed less of a delay in time to evaluation and treatment, whereas the women with the lowest distress thermometer scores had the greatest delays.
“What I think that reflects is that distress, which is … a negative psycho-social factor, and stress, which can be motivational, are flip sides of the same coin,” Dr Fayanju noted. “That may give us some insight into for whom this particular instrument might not be the best measure of what’s really going on in that person’s life.”
In other words, self-reported outcomes in this context may give a skewed picture of who is most at risk — for some patients, the stress of a cancer diagnosis may not, to that person, seem to measurably increase their baseline distress, but nonetheless, piles on an already high level of adverse life events, and can make it incredibly difficult to follow through on evaluation and treatment. For other patients, they may report that the stress is more than they can handle, but in actuality, their behavior is positively motivated by it.
One suggestion the researchers gave for using the distress thermometer in a more holistic and personalized way is to pair it with telehealth screenings at the time of diagnosis. This could not only close the gap in how long it takes a patient to be evaluated and ultimately treated, but could also enable physicians to pick up on cues about a patient’s psycho-social needs in the exact way the survey and distress score flatten them.
“Currently in many centers, patients get a biopsy, get a diagnosis of cancer, then have to wait until they can get an appointment with a surgeon — the last step sometimes [takes] up to 3 weeks,” said E. Shelley Hwang, MD, MPH, a coauthor on the study who is a coleader of the medical and surgical oncology teams within the breast program at Duke University Medical Center. “This initial telehealth step can occur very early after diagnosis, where a health intake can be performed, and the patient can get some general information about breast cancer, treatments, and likely next steps. This would go a long way towards giving patients some initial knowledge regarding their diagnosis, and allows them to formulate meaningful questions for the doctor visit.”
It’s a fortuitous time to make such a recommendation, as the coronavirus disease 2019 (COVID-19) pandemic has forced health centers and insurance companies across the globe to implement and bill for telehealth at record rates. From the patient side, there is an increasing familiarity with interacting with health care providers virtually. This suggestion, however, does not take into account socioeconomic barriers that may make it difficult to access telehealth tools — and these barriers may disproportionately affect Black women.
“These trends will be especially important for patients who live in rural areas, who have often had to travel 3 to 4 hours each way to see us, even for a routine visit,” Dr Hwang said. “Hopefully this will improve future health and health access for these patients.”
Until then, there’s an imperative to view the scores the distress thermometer generates with a grain of salt.
“Our conclusion was that the stress score in and of itself really may be a very poor indicator of overall lack of well-being,” said Dr Fayanju.
Fayanju OM, Ren Y, Stashko I, et al. Patient-reported causes of distress predict disparities in time to evaluation and time to treatment after breast cancer diagnosis. Cancer. Published online November 11, 2020. doi:10.1002/cncr.33310