Survivorship Care Promotes Evidence-Based Approaches for Quality of Life and Beyond

Frank J. Penedo, PhD, explains the challenges of survivorship care for patients with cancer and how he implements programs to support patients’ emotional, physical, and practical needs. Penedo, the director of Cancer Survivorship and Supportive Care at Sylvester Comprehensive Cancer Center, sees opportunities to help lift the burden from patients from diagnosis through long-term survival.

Peers & Perspectives in Oncology: What makes survivorship a vital aspect of cancer care?

PENEDO: We have seen unprecedented growth in the number of survivors in the last 40 years. That growth is mostly attributed to early detection…and treatment efficacy…. Currently, there are about 20 million survivors in the United States.¹ That number will probably reach 26 or 27 million by 2040. It’s important to highlight that the National Cancer Institute [NCI] and the American Cancer Society [ACS] view an individual as a survivor from the day of diagnosis.

Survivorship care is the care that the individual receives after they’ve completed their primary treatment for cancer. Right now, about 5% of the US population are cancer survivors, and the majority of these individuals are aged 65 years or older. They’re not only dealing with cancer, but they’re also dealing with age-related comorbidities [such as] hypertension, diabetes, and arthritis. Cancer can complicate their overall quality of life and physical functioning, given that many of these individuals already have physical limitations.

What are the different types of challenges cancer survivors face?

If we look at the cancer care continuum from diagnosis all the way through end of life, the challenges can vary. At diagnosis, there is a lot of uncertainty and anxiety. How bad is the cancer? Is it treatable? What will the treatment be like? There is not only anxiety and fear but also depression and changes to lifestyle factors. Physical activity, nutrition, and social interactions take a hit once the treatment planning begins. There tends to be an information overload; there are a lot of new treatment options available. Cancers like breast and prostate cancer have varying treatment options that depend on multiple factors that may not be immediately clear to the individual being diagnosed. Having to make those decisions and process that information is a challenge.

Once the treatment begins, you have the symptom burden associated with treatment. A lot of the available treatments are becoming more efficacious, [but] whether it’s surgery, chemotherapy, immunotherapies, or radiation, it can lead to treatment-related adverse events that can be chronic and debilitating and can persist beyond the active treatment phase. There is [also] role strain associated with being treated for cancer. You have to take time off work and your social roles as a mom, a dad, or a caregiver get impacted.

Further down the continuum after that primary treatment, effects persist: fatigue, pain, lymphedema, [and] cancer-related cognitive impairment… and the ongoing surveillance for the cancer [or] secondary cancers, as we know that cancer survivors are more likely to have a second cancer.

Keep in mind that all of this occurs in the context of an individual’s life. It doesn’t occur in a vacuum; it’s not an isolated incident. These individuals are dealing with comorbidities already, especially if they’re older; they’re also dealing with social determinants of health. Maybe there’s a financial strain that’s exacerbated by cancer. There’s recently been attention on financial toxicity and the challenges associated with having to pay for cancer [treatment].

The majority of survivors are older. Our population is getting older, so cancer rates will increase. There are disparities in the outcomes that we see. Individuals with fewer financial resources, individuals from minoritized groups, whether it’s racial or ethnic minorities, individuals in rural communities, or the LGBTQ community, tend to have more disparate and more adverse outcomes, not only in disease activity but in quality of life.

As a profession, psycho-oncology, and oncology in general, has [its] challenges. We have a shortage of oncologists; we don’t have enough oncologists to take care of our patients. The longer-term care of our patients, particularly those who have completed primary treatment, starts getting shifted toward primary care settings. We have a shortage of primary care physicians as well, and primary care physicians or providers in those settings are not trained to deal with cancer, so that’s a big challenge. Balance that against the increasing number of cancer survivors, and that creates a barrier to effective care.

How does the University of Miami’s Cancer Survivorship and Supportive Care program work?

We closely follow the recommendations, and we go beyond that. The concept of survivorship started gaining ground 30 or 40 years ago, and as it’s grown, the National Academy of Sciences, the NCI, and the ACS have made specific recommendations and guidelines to address survivorship.

To give a general overview, we have the mandate to implement patient-centered care. Through that, we have to have very nuanced assessments that address the challenges, including the psychosocial and physical symptoms that are a consequence of cancer and cancer treatments and practical needs. When patients are coming in for care, do they need transportation? Do they need childcare? Do they need financial counseling? That’s one of the areas that we assess. We want to make sure that we’re addressing the unmet needs of the patients.

Depression, anxiety, and overall psychological distress can be common. It could be about one-third of our patients who have clinically elevated levels. We have mechanisms in place to provide social support through groups that address the needs of survivors. We have multidisciplinary services that are embedded within our cancer center that provide services ranging from art and music therapy and massage therapy…to psychology and psychiatric treatment, depending on the severity of the distress that the patient is in.

Another thing that we have is survivorship wellness clinics, which help us avoid the fragmentation of care. It helps the patient make sure that they have an identified primary care provider and that the primary care provider has access to a survivorship care plan [that] summarizes the treatment, the provider team, [and] the care guidelines for those patients so that their care and their follow-up is not fragmented or lost. We do quite a bit of cancer care delivery work. We evaluate these programs through research to make sure we can not only implement them effectively but sustain them throughout the experience of the survivor.

Being an NCI-designated cancer center, a lot of the survivorship work and supportive care that goes along with survivorship that we do is evidence-based. We don’t only provide these services like music therapy, acupuncture, or psychosocial care because it’s the right thing to do, but [because] we know the evidence in the research literature that these programs can make an impact for our survivors.

What benefits to patient outcomes come from providing better survivorship care?

Looking at this from a broader perspective, the [main] benefit is being able to provide the most optimal and best quality of life possible. Research has shown that providing these services can improve quality of life for patients. We’re interested not only in the quality of life, we’re also interested in the physical health component…. We have been able to document that having systematic assessments in place addressing patient needs, whether they are emotional needs, physical needs, [or] practical needs, and providing or meeting those needs, is associated with a lower likelihood of those patients having an emergency [department] visit, or being rehospitalized.² We’re still trying to examine why that is the case. If you’re intervening in time… you’re able to prevent the patient from decompensating to a level where they get to a clinical episode that requires an emergency [department]. We’ve been able to document some of that. Then there’s a plethora of studies that have looked at interventions, whether they’re educational, stress management, nutritional, [or] physical activity, and how these can improve a variety of outcomes, including symptom burdens [for] things like fatigue and depression.

What more can cancer care providers do to offer these services?

The good news is that a lot of cancer centers and community oncology clinics are very well-versed in understanding the support services that either they have at their sites or what may be available in the community. It’s critical for the oncologist and the advanced practice providers working with cancer survivors to make sure that the survivors are being assessed [so] that we have a good sense of whether depression and anxiety is a problem, [and] whether fatigue is persistent and is [preventing] the individual from engaging in social activities; these are all very critical components.

We have to be realistic. I have family members who have been diagnosed with cancer and who have [died] from cancer. I want that oncologist and that provider to be laser-focused on managing that medical condition. That is always the priority… but we also have to understand that other factors—stress, depression, inability to make an appointment because of social determinants of health, financial constraints—all these things matter, and they can impact clinical care. We’ve made a lot of progress, and oncologists realize that we look at the patient as a whole, and we understand not only their disease activity and biomarkers of how their cancer is in remission or progressing but also understand the experience of the patient holistically to optimize their outcomes.

How do you implement programs for evidence-based survivorship care?

There’s a lot of emphasis now on dissemination and implementation science, which is taking work that has been developed in the laboratory and implementing it in real-world settings. A good example of that is that there are decades of research showing that cognitive behavioral therapy and self-management can favorably impact quality of life and can reduce symptom burden or the adverse experiences of having cancer-related symptoms.

What we and others have done is develop programs that can be delivered within the health system to address that, whether it’s an open support group where these skills are provided to the patients or whether it’s using technology like the electronic health record and the patient portal to identify patients who may have elevated depression and release modules that have the skills shown to be evidence-based to improve depression, reduce anxiety, and things like that.

The other example is working with community sites like primary care practices and training providers to not only be aware of some of the challenges of survivorship [but] also giving them the tools and the information or the educational tools that are available to help them deal with the survivorship issues.

What advice do you have for oncologists in the community to support cancer survivors?

We’ve [made] a lot of progress to create a comfortable space for the patient to talk about these survivorship issues, whether it’s treatment-related [adverse events] like pain and fatigue, or whether it’s the emotional consequences of having cancer [such as] fear and anxiety. Trying to normalize that this is part of the experience and the journey of the cancer survivor is really important, and our patients respect and look up to their oncologists and other advanced providers. If they hear from their providers that these issues are important and need to be addressed, that empowers the patient to seek out and receive the necessary services again so that we can improve their quality of life.

It’s important to understand that a lot of these services are evidence-based. There’s a growing [body of] literature that supports how these services should be framed and the most optimal ways of doing this.

Partnerships within community clinics and tertiary medical centers or cancer centers go a long way. We partner with federally qualified health centers that provide primary care, and we’re bringing a lot of the expertise that we have in survivorship to those settings. Creating partnerships with cancer centers is important because we can benefit from one another. We can address the needs of the community by working with these community sites, and they can derive benefit from some of the services and expertise that may not necessarily be immediately available within their sites.

^REFERENCES

^{1. Miller KD, Nogueira L, Devasia T, et al. Cancer treatment and survivorship statistics, 2022. CA Cancer J Clin. 2022;72(5):409-436. doi:10.3322/caac.21731}

^{2. Fleszar-Pavlovic SE, Natori A, Moreno PI, et al. Associations between age and patient-reported outcomes, emergency department visits, and hospitalizations among lung cancer patients receiving immune checkpoint inhibitors. Psychooncology. 2024;33(1):e6293. doi:10.1002/pon.6293}