Survivorship Care “Should Be Considered From the Moment of Diagnosis”

Alicia K. Morgans, MD, MPH

Associate Professor of Medicine

Harvard Medical School

Medical Director, Survivorship Program

Dana-Farber Cancer Institute

Boston, MA

TARGETED ONCOLOGY: What components go into survivorship programs for the patients involved?

MORGANS: At Dana-Farber Cancer Institute, we have a survivorship program that is multifaceted and serves multiple purposes. This includes short-term survivorship care, which is meeting the acute needs of patients who are undergoing disease-directed therapies, including things such as sexual health needs, cardio-oncology needs, sleep therapy, ongoing nephrology or kidney issues, and doing our best to provide the care patients need to ensure they can continue being well during their disease-directed therapy.

We also have a long-term survivorship component of our program, which is meant to help patients transition out of their cancer-directed, disease-based clinic into a more general and holistic follow-up program that helps them transition back to their primary care doctor and pulls them out of the clinic where they’ve been getting their cancer-directed therapy for the past number of years.

We have multiple goals, some of which are to support patients and ensure they are well both while they’re getting their treatment and after their treatment. But we also try to help patients get the specific care they need when they need it, which means leaving the cancer-directed treatment center if it’s the right time and moving on to get closer to [living a more normal life] after their diagnosis. So, we have a lot of goals in that 2-pronged approach to providing care.

How do you feel more community and academic oncologists can incorporate these elements into their practice?

There are community oncology practices that do a phenomenal job at survivorship care. There are some that focus on holistic care from the get-go, providing nutrition support and ensuring patients have access to bone health specialists, cardio-oncologists, and the like, and they do that from the beginning. They are a model of what we in academics can strive to be as well. Any clinic can put together pieces of a survivorship clinic if it is a priority and if they have the time, staff, and resources to try to provide this support.

If they don’t have a specific clinic, they can try within their ongoing follow-up to try to dedicate some of their visits to have more of a survivorship[-oriented conversation].

An example of this could be in my prostate cancer clinic where I am following someone’s prostate-specific antigen during or after their treatment with hormonal therapy, and we might dedicate half of a visit to focusing on cardiovascular health and ensuring the patient is working to understand their cardiovascular risk in terms of blood pressure, cholesterol, and [glycated] hemoglobin A1C or screening for diabetes. Even if I haven’t done all the screening for that patient in the visit, we work to educate patients and connect them with primary care to get some of that survivorship care.

As another example—also a genitourinary example—some urology private practices have a robust bone health component and survivorship program set up where either nurse practitioners or physician’s assistants work side by side with the urologists and provide specialized bone health counseling, DEXA scans, conversations around nutrient supplementation, and potentially adding additional bone health agents if it’s right for that patient. Community oncology practices and academic practices alike can take on survivorship care in many forms. Ultimately, a dedication to understanding what it is and providing that care in whatever way works best for consistent and standardized care within that practice and within that patient population is probably the best way to go.

What are some other tips for transitioning patients back to their primary care physician?

Moving from the care of an oncologist or a surgical oncologist back to primary care can be a traumatic and stressful experience for patients who have spent so much time and energy being frightened, anxious, and physically and psychologically taxed by the treatments they’ve endured.

The most important thing is to make sure patients feel comfortable with the timing of that transition, [which] can be different for every patient. In general, it is considered to be approximately 5 years for many patients who we were able to cure. Patients mentally prepare before they get to that time point; they should feel comfortable that they have a primary care team who will be able to catch them when they get there, understand what they’ve been through and where they’re going, and [understand] what medical needs they may now have because of the consequences of the cancer or its treatment.

Part of this transition can be eased by a survivorship care plan, which is essentially a document [that consists] of the patient’s treatment history and what to think about in terms of their long-term health and outcomes moving forward. That is a way to communicate between the cancer world and the primary care world and ease some of the stress and burden that the patient is feeling, and that the accepting primary care physician may be feeling on the other side.

There are general templates that can be found on the internet; the American Society of Clinical Oncology and the American Cancer Society both have templates for that. Individual practices can put tweaks on those templates and make them their own, so they can ensure that what they think is important for a given patient or patient population is going to be covered. These documents provide a great start and can serve as general templates, and for some practices, that may also serve as the document itself if that’s what works best for the practice.

For your patients, what has been the most critical part of the survivorship program that you’ve seen?

One of the most underrecognized but clearly needed parts of the survivorship program at Dana-Farber Cancer Institute is the sexual health clinic. It’s something that we in many ways tend to forget as we’re thinking about ensuring that patients are focusing on getting the most effective treatment and getting their cancer either cured or better under control. Years before I got there, Dana-Farber Cancer Institute opened a sexual health clinic and staffed it with a wonderful behavioral health sexual therapist, then they brought in a gynecology physician’s assistant [and] a gynecology physician who specializes in gynecologic health after pelvic radiation or after a bone marrow transplant. Over the years, these groups became exceedingly busy. I am always surprised when I ask patients about it—as we explore some of these topics and when we’re talking about follow-up—that at least 50% to 60% of patients are very keen to be referred over to a sexual health team, whether it’s gynecologic patients or patients for the behavioral health counselor.

In other practices where I’ve worked in the past, I didn’t ask about these issues as much as I do now. The main barrier is that it’s not especially common to have access to these therapists. But when you have access and when you make it a priority to try to have access, you’ll find that those practices are immediately filled. Our sexual health therapist’s waiting list [is more than 6 months out]. We can do our best to get patients in who are having more urgent situations. Overall, it is extremely important to patients and something that we, in many ways, don’t always feel like we can support and, because of that, don’t necessarily ask or try to engage with patients on it. But when you ask, the floodgates will open. If you have the support and the team members there to provide that care, it is something that’s important to patients.

What is the most important takeaway for oncologists reading this?

Survivorship care, whether you have an established practice or you’re thinking about establishing a support system—even in our system, which has been set up for well over a decade at this point—is always an evolution and an ebb and flow between patient needs and provider availability. It’s not the easiest part of cancer care to tackle. It’s not as straightforward, but it is extremely important and highly rewarding. Any efforts that oncology teams can make in terms of even tackling specific populations and trying to support their survivorship needs moving forward can be rewarding and is healing for patients who are going through a lot.

It is not something that should be an afterthought but is something that should be considered from the moment of diagnosis onward. How can we support this patient in their entirety to not be as traumatized as they could be and to ultimately have the best life on the other side?