February 26, 2018
4 min read

Many women forego adjuvant breast cancer treatment due to distrust of health care system

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Lorraine T. Dean

Nearly one-third of women with breast cancer went against their physician’s advice and chose not to begin or complete adjuvant therapy, according to study results.

Many of the women reported health care system distrust as a significant cause for their decision.

“If we want more women with breast cancer to complete their treatment, we will need to deal with their beliefs about the health care system — and I do think we can modify those beliefs,” Lorraine T. Dean, ScD, assistant professor of epidemiology at Johns Hopkins Bloomberg School of Public Health, said in a press release.

Adjuvant therapy reduces the likelihood for breast cancer recurrence and prolongs survival. However, many women do not start or complete their prescribed adjuvant therapy.

Dean and colleagues sought to clarify the reasons behind treatment discordance — defined as not following a surgeon’s or oncologist’s treatment recommendation — in hopes of increasing treatment compliance and improving long-term survival.

The researchers conducted a survey of 2,754 women (median age, 52; 69% white) who lived in Florida and Pennsylvania between 2007 and 2009. All women were diagnosed with invasive, localized breast cancer between 2005 and 2007.

Survey respondents self-reported data on demographics, cancer stage, treatment discordance, and health care system and physician trust or distrust.

Researchers used logistic regression to measure the association between the highest and lowest tertiles of health care system distrust and the dichotomous outcome of treatment discordance.

Treatment discordance appeared more common among women who reported general distrust of medical institutions and health care insurers. Women in the highest tertile of health care system distrust were 22% more likely to report treatment discordance than women in the lowest tertile.

Physician trust did not affect health care system distrust and treatment discordance.

HemOnc Today spoke with Dean about the study, the clinical implications of the findings, and why distrust appears to drive such a high percentage of treatment discordance.


Question: How did this study come about?

Answer: As an undergraduate student at The University of Pennsylvania, I was a research assistant who helped to develop the Healthcare System Distrust Scale, which was unique in that it focused on distrust of a system rather than a person or health care provider. From that time, I have had a long-term interest in distrust, but there are not always large-scale data to link health care system distrust to health outcomes. Further, my research interest is in the social determinants of survivorship disparities. I saw this as an opportunity to explore whether there were differences in distrust and how that might impact health behaviors.


Q: What did the results show?

A: Being at the highest levels of health care system distrust was associated with 22% increased odds for discontinuation of adjuvant breast cancer treatment. This association was not explained by a lack of trust in the physician offering the treatment.


Q: What are the clinical implications of the results?

A: The results are interesting because some might think that, if a person comes in for an initial cancer treatment, there is no issue of distrust. However, our study suggests that high levels of distrust can cast a shadow over a patient being fully compliant with cancer treatment. This points to a need for health care systems to be trustworthy institutions in order to have the best outcomes for patients.



Q: Did your findings surprise you?

A: I was not surprised to see that health care system distrust played a role. We have published on that before and knew that existed. I also was not surprised at the rate of forgoing treatment, which is a bit less than what has been previously documented in studies that have followed people for longer periods of time. However, what did surprise me was that physician trust did not play a mediating role, which may be because people generally will navigate to physicians they like and trust, and away from physicians they do not like and trust. Even then, physicians operate within a system. Despite high trust in physicians, there may be distrust of the overall health care system, which works above and beyond people’s impressions of their personal physicians.


Q: Can you talk about some of the state-level differences you observed?

A: In our sample, those who lived in Pennsylvania were less likely to be discordant than those in Florida. One potential reason may be that a significantly lower proportion of respondents from Florida than Pennsylvania were insured (93% vs. 97%). This may mean that Florida participants were less able to complete treatment, or it may have to do with quality of health insurance to continue to seek care. For example, Florida has a long-standing requirement that insurers comprehensively cover costs for second medical opinions, and patients who receive second medical opinions may not have complied with their original physicians’ treatment recommendations after a second opinion. There also may be factors our study did not measure that explain the state-level differences.

Q: Why do you suspect that distrust drives treatment discordance to such a great extent?

A: There may be several reasons why this distrust exists. In some cases, it is as an extension of a growing lack of trust across U.S. institutions in general. For health care specifically, at times, the elements of the health care system has not been so trustworthy. Consider a history of unethical experimentation on some populations, and even forced sterilizations that have persisted up through recent times. General feelings of distrust of the health care system could spill out in many ways, from people not showing up for treatments to people starting treatment and ending it early. That said, the onus is on the health care system to show itself to be trustworthy and to demonstrate that the primary reason for existence is not for self-serving reasons of profit or scientific pursuit at any cost, but to better the health and lives of patients.


Q: How can patients’ beliefs about the health care system be modified in hopes that more women pursue adjuvant treatment and derive its potential benefits?

A: There have not been studies to assess how health care systems can become more trustworthy or show that they value their patients. However, this is an area for future study. My personal belief is that moving toward a system in which everyone has quality preventive and curative health care, regardless of ability to pay, can go a long way to show that the health care system values them as patients. If businesses can learn to increase loyalty in trust and their brands, why not the same with the health care system? – by Jennifer Southall



Dean LT, et al. Cancer Epidemiol Biomarkers Prev. 2017;doi:10.1158/1055-9965.EPI-17-0479.


For more information:

Lorraine T. Dean, ScD, can be reached at Johns Hopkins Bloomberg School of Public Health, 615 N Wolfe St., E6650, Baltimore, MD 21205; email: ldean9@jhu.edu.


Disclosures: Dean reports no relevant financial disclosures.