New research suggests that a general distrust of the healthcare system leads nearly one third of women with breast cancer to skip or fail to complete adjuvant therapy. Patients' trust in their own physician does not seem to be a factor.
"If we want more women with breast cancer to complete their treatment, we'll need to deal with their beliefs about the healthcare system ― and I do think we can modify those beliefs," lead investigator Lorraine T. Dean, ScD, assistant professor of epidemiology at the Johns Hopkins University Bloomberg School of Public Health in Baltimore, Maryland, said in a statement.
"Understanding people's relationship with the healthcare system is especially timely, given recent calls for healthcare reform," Dr Dean told Medscape Medical News. "While we know that most breast cancer patients start treatment, many don't complete it. Previous work had suggested a role for distrust for those who started treatment, and what this study shows is that even those who trust the system enough to start treatment might not trust it enough to complete treatment."
The study was published online September 29 in Cancer Epidemiology, Biomarkers and Prevention.
Physicians "have a role in contributing to trust or distrust" of the system.Dr Lorraine Dean
For the study, the team used Pennsylvania and Florida cancer registries. They mailed surveys to women with breast cancer to gauge their view of adjuvant therapy and their trust in the healthcare system. There was a 61% response rate; the final sample included 2754 women (mean age, 52 years) who had been diagnosed with localized invasive breast cancer. The women completed the nine-item Health Care System Distrust Scale and the seven-item Trust in Physician Scale.
About 70% of the respondents said they received all adjuvant treatments their surgeon or oncologist recommended; 30% said they elected not to receive at least one recommended adjuvant treatment. Of those 30%, 10% did not follow their physician's advice on radiation treatment, 11% refused recommended chemotherapy, and 18% failed to follow advice on hormone therapy.
Women with the highest distrust of the healthcare system were 22% more likely to report not following their provider's adjuvant treatment recommendation than their peers with the lowest distrust. In contrast, a woman's trust in her physician was not a significant factor in whether or not she followed advice on adjuvant therapy. Many women trusted their physician even when they did not trust the broader healthcare system.
"This study suggested that trust in physicians did not play a significant role in whether or not a breast cancer patient would continue with treatment," Dr Dean told Medscape Medical News. "However, physicians are members within the larger healthcare system and thus have a role in contributing to trust or distrust of that system. If we want women with breast cancer to complete their treatment, physicians may need to deal with beliefs about the healthcare system and address those beliefs," she said.
This may include "assessing patient's buy-in before adjuvant treatment begins and potentially using motivational interviewing techniques to show the patient why completing treatment is in their best interest, or setting up systems to have an office staff member personally follow up with patients who did not complete the full regimen of treatment and assessing and removing any barriers that patients suggest at that point, which shows patients that we care for their well-being and value their health," Dr Dean said.
We need a deeper dive on this [to find the] root of the problem. Dr Tufia Haddad
Approached for comment, Tufia Haddad, MD, a medical oncologist at Mayo Clinic, in Rochester, Minnesota, said, "The challenge is in knowing how each individual defines the healthcare system. Do they think of it from their local institution or more broadly, as their network, or as their insurance company, or a pharmaceutical company, or their doctor? I think to take this research to the next level, you really want to tease out what within the healthcare system don't patients trust.
"We need a deeper dive on this because, for me, it's really hard to know how we can address this issue when it's not clear where the root of the problem is within the healthcare system," Dr Haddad told Medscape Medical News.
The finding that it's not a matter of distrusting their physician is "very reassuring," Dr Hadded added, "in showing that least at the patient-provider level, the trust is there."
The study authors also note that women who did not follow their providers' advice on adjuvant therapy were 40% more likely to experience recurrence of their cancer during the study period. This finding was made after adjusting for healthcare system and physician distrust, race, income, marital status, employment status, health insurance, stage, and state of residence. "This provides initial support that discordance that arises due to distrust may lead to poorer health outcomes," they write.
Dr Haddad is not surprised. "When you look at other research, most studies are pretty consistent in showing that somewhere between 65% and 70% of women will complete the full course, usually 5 years, of hormonal therapy. That means 30% to 35% of women are not, and studies have shown worse outcomes in women who don't complete hormonal therapy, with higher rates of relapse and worse survival," she told Medscape Medical News.
"Maybe if you just look at stage I breast cancer and compliance, it might not be as compelling that adherence significantly affects outcome, but globally across all stages of breast cancer, compliance does matter," Dr Haddad said.
The study was supported by Johns Hopkins and the National Institutes of Health. The authors and Dr Haddad have disclosed no relevant financial relationships.
Cancer Epidemiol Biomarkers Prev. Published online September 29, 2017. Abstract
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