Building Communities Around Patients: Cathy Eng, MD

Continuing a discussion from March with Cathy Eng, MD, FACP, FASCO, she highlights the topmost concerns that young adults fighting cancer and navigating oncology care systems—perhaps for the first time—have compared with older patients who have cancer. Eng is codirector, GI Oncology; coleader, GI Cancer Research Program; and director, Young Adult Cancers Program, Vanderbilt-Ingram Cancer Center.

Eng participated in the panel discussion, “Health Equity in Cancer Care Delivery,” during the January Institute for Value-Based Medicine^® event, “Elevating Value in Cancer Care: Nashville.”

Revisit part 1 of her interview here.

This transcript has been lightly edited for clarity; captions were auto-generated.

Transcript

What unique challenges do young adult patients with cancer face vs older patients?

Our young adults, as you can guess, any young adult facing a diagnosis of either early-stage or advanced-stage cancer, face very, very different obstacles in the sense that we have to think about family planning, we have to think about fertility preservation, we have to think about job security, we have to think about transportation. We have to take into account the financial stress as well, because [for] a lot of these physician visits, most physicians’ clinics are not open on the weekends. This interferes with job security; this interferes with a family member providing transportation.

One of the things that we try to do as part of the Young Adult Cancers Program is to recognize that there are multifaceted aspects of the cancer care, not just the treatment. The treatment, obviously, we're going to leave it to their treatment team, but how can we support that patient? How can we get them support for their concerns about body image? If they have a colostomy, even having a port, for thinner patients, a port is so obvious, and it's clear that they are probably receiving some type of therapy if they were to wear a certain type of blouse or top.

We are there to support them, whether it's psych-oncology, music therapy, fertility planning, advanced estate planning—those things have to also be considered for our patient population. And even the conversation with their children; we have worked with other organizations, so we can connect the patients or their family members with other organizations to provide support for the children. Some of them even include simple things like camps away with the family, so they can identify with another individual that is going through what they're going through and so they don't feel alone. That's what I hear quite frequently, is that they often, when they walk into the waiting room—especially in GI [gastrointestinal] cancers, for instance, where I work—the majority of individuals are older than they are, and so they already feel a little alienated and separated from the majority of the people in the waiting room just by their age difference alone.

How can we make up for those differences by providing support to them? We have a nurse navigator that's now part of our Young Adult Cancers Program. We have a program manager that is new, that is helping us. We're creating more social events, more ways to interact with others, and more support groups and education. Education is extremely important, so they feel informed about their disease.

Why is it so important to build long-term community trust, given the growing influence of political views over science?

I think it's really important that we need our patients and their family members to feel comfortable with receiving their care, receiving their education, and treatment at an institution such as ours, where they feel that they can walk in, ask appropriate questions, feel informed, and then can come back and ask additional questions if needed.

We want to make sure that we build a community around the patient, so they feel that all the other providers involved in their care really care about them and want to help them. I think that's what's most important. I think, unfortunately, there's been instances going back several years—instances like Henrietta Lacks’ story, from Hopkins—where there is clearly a mistrust that was built based upon a young woman that provided her tumor sample without really knowing. I would say building the trust, we also provide at almost any opportunity, if we are to collect any information from a patient or any blood or tissue specimen, we consent our patients and we give a copy of that consent to the patient so they feel informed.

They understand in the majority of instances, a lot of the data is deidentified and it goes into a research pool, depending upon what tumor type they may have. It's really also important to understand that participating in cancer research is critical for advancing cancer research. I think we have to learn from the disease itself. You may not want to give a simple blood specimen because you don't understand its value, that it may not be that important, or you just don't want to give any information. But, in fact, it may be one of several samples that could provide some new hypothesis for future research, so I think that's important.