Moving Immunotherapy Patients Into Survivorship: A Conversation

Recent advances in immuno-oncology (IO) therapies have led to rapid, effective treatments for subsets of patients with cancers that have proven resistant to conventional treatments. Subsequently, increasing numbers of IO patients are transitioning to post-treatment survivorship. However, these patients may still experience delayed physical and psychosocial side effects from their immunotherapy treatment (including depression, pain, and fatigue), which can negatively affect their quality of life. 

Thus, it is important that when patients are handed off to their primary care physicians or other providers, those providers have a good understanding of the treatments their patients have received and the delayed side effects they may encounter. In June 2020, the ACCC released two videos in which expert panels of providers across the cancer care spectrum discussed the unique survivorship needs of IO patients and the importance of effective care coordination and communication within the multidisciplinary cancer care team. During the discussions, panel members identified actionable steps that cancer care providers and allied healthcare professionals can take to address the survivorship needs of this specific patient population.

Below, two panel members— Regina Jacob, MD, MSCE, an internal medicine physician and associate professor of clinical medicine at The Lewis Katz School of Medicine at Temple University, and Thomas J. Smith, MD, FACP, FASCO, FAAHPM, an oncologist and palliative care specialist and the director of palliative medicine at Johns Hopkins Medicine—continue their conversation about what is standing in the way of IO patients receiving comprehensive survivorship care. 

ACCCBuzz: Why is communication with a patient’s primary care provider so important when that patient is receiving immunotherapy?

Dr. Jacob: From the primary care side, a lot of the IO therapies are fairly new, and we’re still learning about their short- and long-term side effects. We are also learning that a lot of adverse events tend to happen well beyond treatment. Having good communication with primary care providers about what treatments their patients have received and what side effects or adverse events we should be looking for in specific timeframes is crucial to getting everybody on the same page.

Dr. Smith: For example, if you know that pneumonitis happens in 19 percent of IO patients, when somebody on immunotherapy develops a cough and shortness of breath, you can’t always just attribute it to exacerbation of asthma. And physicians should know that although immunotherapy has changed the landscape for some cancers (melanoma in particular), other cancers remain nearly universally fatal (like breast and lung cancer). People are living longer, but still dying, and we can’t always figure out who is at risk. So, it's still important to discuss advanced care planning.

Dr. Jacob: Understanding the goals of therapy up front is important because that allows us to tailor primary care. For example, if somebody is dying of kidney disease, we're not necessarily going to send them for their routine mammography or colon cancer screening. Those discussions would be changed dramatically if the immunotherapy is for palliation and not curative care.

Dr. Smith: Primary care providers should know whether a patient’s goal of therapy is curative, disease-modifying, or palliative only. We don't always convey that information adequately in our medical records. Understanding the goal of treatment may help primary care doctors understand potential toxicities if they occur. The main side effects of immunotherapy are so different from chemotherapy: pneumonitis, colitis, dermatitis—almost anything can get inflamed. Some side effects are essential for immunotherapy to work.

ACCCBuzz: What are the challenges with relying on EMRs for care transition or coordination?

Dr. Smith: EMRs were set up as a billing mechanism. Reading most patient notes is too time-consuming, since there's so much detail and so little effort put into organizing a problem list and a plan for each problem. To better organize patient notes, I make a two-column table: one that lists potential problems and one that lists suggestions for fixing those problems. For example, if a problem is “pain from bone metastases,” I list in the column next to it several treatment options, including steroid treatment, radiation therapy, and giving the patient 8 mg of dexamethasone before treatment to avoid a flare-up.

Another problem a patient may present is depression. In the column next to that, I would list items such as exercise 40-45 minutes a day, take antidepressant medication, and refer patient to a specialist. When transitioning care, I can put that form in a patient’s after-visit summary and copy and paste the letter to the PCP and the radiation therapist so we’re all on the same page.

Dr. Jacob: The EMR is exactly as Tom said: built for billing and not necessarily for patient care. Although it can be helpful, it depends on how much information you put in it for it to work for patient care. Part of the problem is that there's a lot of clinician variability in using the EMR. As a result, there's no consistency and no reliable way to use it to communicate. We have so many ways of communicating, but we're not actually talking to each other.

I think there is fatigue when you're getting bombarded with information from 19 different places. Keeping patient information about the exact same encounter in so many different locations results in fragmented or delayed care because we don’t always have access to the information we need. Having a universal way to communicate these care plans in these summaries would be nice. If nobody wants to use the EMR build-in, fine, but then put information in a specific place in the note so we know where to find it. I would say that we need to have less variability and more reliability in order for this to actually work.

ACCCBuzz: How can the hand-off of the patient back to primary care be improved?

Dr. Smith: We've gotten in the habit of doing “cold” hand-offs (a letter or sometimes even nothing). A “warm handoff” requires me getting on the phone and speaking with the referring physician and sending them useful, short information. When somebody's finished six months of adjuvant chemotherapy, for example, the most I've ever gotten is a letter saying they're done, nothing in it saying, “Here's what to watch for.” When I’m done with somebody and they’re not going to see me except maybe once a year, I outline the most important aspects of the disease or its treatment for that particular patient and make sure it goes to the right healthcare provider.

Dr. Jacob: Culturally, transition of care is a pain point all over. We have transitions from inpatient to outpatient, from pediatric care to adult care. It's a constant conversation, especially when care is complicated. Often in cancer care, there are questions about who's doing the pain management, coordinating other screenings, or doing surveillance testing. Those aspects of care coordination would be more helpful using a warm handoff. I understand that culturally we're doing fewer phone calls and spending more time in the EMR. But if the EMR is going to replace the warm handoff, then the EMR has to be equivalent to a warm handoff. And right now, we don't seem to be in that place.

View the IO expert panels of providers across the cancer care spectrum discussing the unique survivorship needs of IO patients: Improving Care Team Communication and Coordination for Immuno-Oncology Survivors and Meeting the Psychosocial and Physical Well-Being Needs of Immuno-Oncology Survivors