AJMCtv® Interviews, August 2018

Denalee O'Malley, PhD, LSW, Instructor, Department of Family Medicine and Community Health, Research Division, Rutgers Robert Wood Johnson Medical School, New Brunswick, New Jersey

How can primary care doctors and oncologists collaborate to ensure that premenopausal patients with breast cancer have the necessary support to address the unique concerns of relationships, work, parenting, and other caregiving issues in a younger generation?

It’s important for the primary care physicians to get a report from the primary oncology team with both the treatments that patients have received and the anticipated late and long-term effects, as well as a surveillance plan. That’s currently called a cancer survivorship plan, and so as a part of that plan, [it designates] who’s going to be responsible for the different aspects of a patient’s care. For younger [survivors of] breast cancer, in particular, if there are anticipated changes in menopausal status, that would be helpful for primary care physicians to know. Also, who is going to be...the point person for symptoms management—so if something comes up, does the patient know who to call and how to get their needs met? [That] is important for the navigational experience for the patient.

In your research, have you discovered trends that indicate which patients fare better after active cancer treatment has been completed?

In my own research, what I focus on often is the experience of [patients with] cancer [who] have comorbid conditions. Also, I’ve done some work with longer-term survivors, and with longer-term survivors, [those] patients who have perceived to have had to make a financial sacrifice during the acute treatment experience can have longer-term experiences of distress, psychological distress. So I think the impact [on] finances at the acute phase can have a really enduring effect on someone’s experience over the long term. What gaps do caregivers and patients face when trying to access and understand health information during treatment and post treatment? How can oncologists and primary care physicians ensure that health literacy issues are resolved so that patients are informed about their options?

This is a really tricky issue because [as] treatments become more and more complicated, it…can be very time consuming and complex to communicate treatment options but also risk in a way that people understand that. I think it’s really important to assess what a patient understands about their illness. Also, what they understand about the goals of their treatment: Is everyone on the same page [regarding] the actual goal of the treatment? And what are the practicalities: Do they understand what they need in that environment to manage that? Do they have the practical issues covered financially to be able to get the resources they need to manage the day-to-day issues getting to and from treatment? I think that not only do we need to asses it from a health literacy perspective, but [we] also [need to help] patients make sense of what this means to them in their world. Do they accommodate it without help, and do they need help, and are there people on the healthcare team who can assist them so that they can have the optimal treatment outcome?

Are payers doing enough to ensure that survivors of cancer receive appropriate follow-up care, and, if not, what needs to change?

Don Dizon, MD, FACP, Director of Women’s Cancers, Lifespan Cancer Institute; Clinical Director, Gynecologic Medical Oncology and Director of Medical Oncology, Rhode Island Hospital in Providence

I think that currently the evidence in survivorship is evolving as the population of [survivors of] cancer is growing. I think that as more information is developed about risk stratifications, which patients have the most complex long-term sequelae. Payers can really incentivize providers coordinating that care and providing that care in a way that’s efficient but also effective. I think that is improving the information evidence over time, and I think payers can incentivize putting that evidence into practice.How has care for the sexual health needs of patients changed over the years?

The care for sexual health needs for patients unfortunately has not changed that much over the years. Part of it is [because] I don’t think oncologists are necessarily trained or comfortable discussing sexual health with their patients. There is a movement now in select centers where sexual health services specific to patients with cancer have started to gain footing. Certainly, in my own experience, I have started several sexual health programs in my own institutions. More recently, I’ve started working on what I call the oncology sexual health first responders clinic at the Lifespan Cancer Institute.

But what it takes is really some passionate provider to take up this area and say, “I will be the person to help my patients.” Without it, it’s hard to develop these services nationwide. But to meet these needs of patients no matter where they are, there are some very good resources—both in written form as well as online—that patients can access independent of their oncologist visits or independent, I should say, of the lack of discussion within their cancer centers. I do still believe that these are essential issues that need to be discussed to help improve survivorship, whether it’s a patient who’s living without any evidence of cancer or for patients still living with active disease. You should not have to give up your sexual health because of cancer. My hope is that going forward, these issues will be more readily available and addressed by cancer centers.

Are there services that payers are not covering that could improve quality of life for women after breast cancer? If so, what are they?

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