COMMENTARY

From Oncology Care to Primary Care: Reassuring Survivors

Lidia Schapira, MD; Neelima Denduluri, MD

Disclosures

June 12, 2019

This transcript has been edited for clarity.

Lidia Schapira, MD: Hello. I am Lidia Schapira, associate professor of medicine at Stanford University. Welcome to Medscape Oncology Insights. With me today is Neelima Denduluri, a medical oncologist at Virginia Cancer Specialists, a practice in the US Oncology Network. Welcome.

Neelima Denduluri, MD: Thank you.

Preparing Patients to Transition From Active Therapy

Schapira: It's such a pleasure to chat with you. Both of us look after women with breast cancer, and we truly cherish and value the relationships with our patients. How do you prepare your patients for the end of active therapy when they are being treated, say, in the adjuvant setting?

Denduluri: That is a really good question. I feel like it's individualized for everyone. Some women, after they finish their adjuvant endocrine therapy, still want that comfort of seeing us annually, even though I tell them they don't really need me. If they feel like we have a good relationship with their primary care, and we clearly outline what we need for them to do, some women are okay because they feel like [they are busy with] a job and kids and don't need one more doctor's appointment.

But there is another group of women that feels very strongly that they want to continue to see us. They always ask, "Are there scans? Are there blood tests? What do I do next?" It's kind of a quagmire for them of what is next.

Schapira: It's difficult for us as oncologists as well because we've been involved in their lives for so long. Part of the challenge that I think we all face now is with the growing number of breast cancer survivors. We have 3.5 million breast cancer survivors in the United States, and if we think about survivorship starting with the moment of diagnosis, we are not going to be able to care for them forever. How do you set the expectations for patients for perhaps preparing them for an end or a transition?

Denduluri: Having a more mature practice, I tell them at the beginning when we meet, "You won't be here forever. We'll always be available to you, but we'll continue to work with your team. It's important that you continue to have a relationship with primary care." As you know yourself, often [oncologists] become their primary care. I do set that expectation that they really need to continue to have a relationship with their gynecologist and their primary care. In our practice, we're also using more advanced practice providers as well. We tell them in the first visit that we work as a team so they will see them or us. For those patients who really don't want to leave the practice and have very, very low risk for recurrence, we sometimes have them see our advanced practice provider once a year, and that gives them some satisfaction.

But as far as expectations, I'm starting to tell them upfront that this is a journey. It's multifaceted and there are multiple people, and it's important for them to have a network and support groups where they can continue to go if they want to retain that community. That also helps when you are trying to keep them from coming back. It's not that we don't want to see them, because like you said, we treasure our relationships with them. We want to know when their child graduated and we want to know if fertility was successful. It's just that when we think to ourselves that it's time for them to move on, it helps when they have a support group.

Working With Primary Care

Dr. Schapira: Absolutely. You touched upon a few things that I'd like to come back to, and one is what the patient is thinking. And I'm sure you have heard this, as I have, from patients. Sometimes if their care is very fragmented, they lament the fact that we're not communicating with their primary care; they then go back to their primary care who perhaps have been left out during their active cancer treatment. Or they have persistent symptoms and they're not quite sure where to go. On top of that, fear of cancer recurrence often looms large and produces some anxiety. How do you stay in touch with the primary care docs? Or if a patient does not have a good relationship with their primary care, how do you help them find that?

Denduluri: These are good and relevant questions. Universally, we are now giving patients survivorship care plans, whether it's after their surgery or after their chemotherapy. If they are not undergoing some form of chemotherapy, they usually get some kind of care plan if they've had radiation. We put their pathology report and all of the long-term preventive issues they need to discuss [together with their care plan] and mail as well as fax that to their primary care.

Schapira: Sometimes we hear from primary care docs that they don't get it. Do you hear that as well?

Denduluri: Absolutely. One other thing we've been doing more as an outreach is having coffee or dinner meetings with some of the primary care doctors so they talk to each other as well. Also, when we send the survivorship care plan, sometimes we send them the American Society of Clinical Oncology (ASCO) plan for what tests should and should not be ordered. Then we give [a copy] to the patient so they can show it to the primary care in case there is some kind of misunderstanding.

The other thing we do in terms of setting expectations or communication is that if [the primary care doctor] is not a good fit for the patient, then we personally try to help find another primary care for them.

Schapira: Tell me a little bit more about how you engage the community of primary care doctors in becoming more involved in care planning and how you identify those who perhaps are more willing to receive cancer survivors.

Denduluri: I've been practicing in the same area for quite a bit of time, so I know who wants to maintain these relationships and who has an interest. It has been very nice for me to be able to call them and say, "Mrs Smith is having a tough fit; would you mind?" But we're having an increasing physician shortage, whether it's oncologists or primary care, and sometimes we are not able to meet those expectations from the primary care perspective. That is where a very comprehensive survivorship plan—so patients can advocate for themselves—has also been helpful.

Empowering Patients

Schapira: Do you do anything else to help patients become empowered and better able to manage survivorship challenges?

Denduluri: Like you, I do some advocacy work and I am very involved with the support groups in the area. Part of it is to give them the message that survivorship is a journey, and hopefully a lifelong journey. It's a fluid issue so [I tell them to] stay connected with the community and see what is changing. Speaking with advocacy communities [is important]; they help take care of each other, too, if someone feels lost in transition.

Schapira: Basically, it's strengthening the information, education, and community supports, and perhaps connecting patients to other patients through support groups or through legitimate advocacy groups so they can help each other solve problems without having to see a healthcare professional. Then, strengthening the network of engaged primary care providers and having advanced practice practitioners within the oncology setting who perhaps focus on survivorship care. It sounds like you have thought about all of the possible ways to do this.

Denduluri: The other interesting thing that I have found lately is that social media has really empowered our survivors, and that is another avenue for them. The thing we have to work on as a community, though, is that there are so many online resources that are not necessarily curated by us. I ask them what websites they're visiting and tell them the ones I trust, such as Cancer.gov or Cancer.net, because the content is reviewed and monitored by healthcare professionals. That is another educational avenue that I think we're possibly underutilizing. Survivorship is such a key issue—not just unique to breast cancer but patients at risk for secondary malignancies or secondary issues such as organ dysfunction. It's really important that we figure out a way to garner educational videos and things that they can use as another tool.

Schapira: We use an electronic health record, and so we provide patients with an after-visit summary. Part of the information that goes into that after-visit summary are sites that we recommend they use to become better informed. Cancer.net is our preferred site. But it's the same idea—that we want to promote education and good information, and actually help them understand that they may also be vulnerable to misinformation from sites where opinions are expressed that are not necessarily vetted by experts.

Advanced Practice Providers

Denduluri: Regarding how we empower our advanced practice providers, we're really lucky because our advanced practice providers have been very engaged with helping develop care plans. As you know, a lot of the survivorship care plans are quite onerous. They have helped streamline some of that so they become part of the process on day one. We constantly educate our advanced practice providers and partner with them to figure out a good, sound survivorship plan.

Schapira: We've all learned that the survivorship care plan is a tool and a process and requires communication, personalization, and customizing. It's really great that you provide that with somebody who understands their treatment and perhaps has even been part of that acute phase of treatment.

Success in Survivorship

Schapira: What have you learned from your patients about what works in survivorship? What have you learned about success in survivorship?

Denduluri: It really is a unique relationship with our patients, so one size doesn't fit all—like much of medicine, right?

I have learned not to push back too much if they just don't want to leave. Even if they are well and it has been over 20 years, we can continue to educate and empower them. However, I have learned that a small percentage of women will just not feel comfortable. The other thing I have learned is that reassurance is very important. [We tell them] that we are always going to be available if something happens, and that we're just a phone call away from whatever doctor.

Schapira: I know that the relationships you have with patients are meaningful and impactful to you as well. Do you care to share with us some of the aspects of practice, in terms of looking after this population of women, that have been most meaningful to you?

Denduluri: I've been really lucky. I have practiced in the same area and now I work in the same community that I live. I see these women at Starbucks or at the grocery store, and it's very heartwarming to see them continue to live their lives. It's also nice to meet their families if they want me to; obviously, you and I both know that with HIPAA (Health Insurance Portability and Accountability Act), we don't acknowledge people unless they acknowledge us first. But absolutely, it's just heartwarming to watch their families grow or their see their relationships with friends grow. It's just wonderful.

Schapira: I'm sure they treasure the relationship they have with you.

Denduluri: As do your patients.

Schapira: Thank you, Neelima. It's been a real pleasure. This has been a fantastic discussion. And thank you, the audience, for joining us. This is Lidia Schapira for Medscape.

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