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Though a cancer diagnosis is accompanied by fear, symptoms of anxiety and depression, and significant hardship, the threat of a vastly shortened lifespan has diminished in the past several decades. Cancer’s impact varies widely depending on disease site, but as targeted treatments advance, more survivors are living long, fulfilling lives and dying of causes other than cancer. While this trend represents a milestone in cancer research and treatment development, it also signifies a high growth rate of a population with unique needs that require the same care and attention as those in active treatment. Today, 18.6 million Americans have a history of cancer, and this number is projected to exceed 26 million by 2040.¹,² Many survivors face lifelong changes from their cancer, with more than half experiencing psychosocial distress and nearly half experiencing extended fatigue.³,⁴
Traditional cancer survivorship care has relied mainly on specialist-led follow-up, often with ad hoc processes and a strong focus on detecting recurrence rather than addressing comprehensive, coordinated survivorship needs. A population nearing 20 million survivors makes such a care model difficult to deliver, especially given the current oncology workforce shortage. This challenge calls for an integrative solution that makes survivorship care readily available to all patients—whether they completed treatment one year ago or 10.
Understanding the scope of this challenge, Sylvester Comprehensive Cancer Center in Miami, Florida, recently launched the Sylvester Survivorship and Supportive Care Institute. One of only a handful of dedicated survivorship institutes in the nation, it was designed to meet the full spectrum of its patients’ needs. To learn more about this comprehensive approach to survivorship care, a decade in the making, Oncology Issues spoke with Frank Penedo, PhD, Associate Director for Population Sciences and Director of the Sylvester Survivorship and Supportive Care Institute at Sylvester Comprehensive Cancer Center, and Professor of Psychology and Medicine at the University of Miami Miller School of Medicine.
The inspiration behind the institute comes from multiple angles. From a pragmatic standpoint, the number of cancer survivors today is unprecedented, requiring dedicated support. “About 70% of survivors are living five years or more, which is a significant increase from the 1960s and 70s, when the number was closer to 50%,” said Dr. Penedo. “Right now, survivors account for 5% of the US population, and about 78% of them are 60 years or older, which brings its own set of challenges.” Such a high number of survivors coupled with a national shortage of oncology providers often leads to these patients being seen in primary care settings, which tend to lack the appropriate training and tools to effectively address many survivorship concerns.
With so many older adults in this population, comorbidities and care coordination are key factors in the survivorship experience—both for quality of life and other health outcomes. The intersection of comorbidities and cancer necessitates thoughtful care coordination among oncology providers, treatment teams, and specialty care. According to Dr. Penedo, the chronic and debilitating nature of treatment effects and compromises to emotional well-being and multiple aspects of quality of life were major drivers of the institute’s development. These experiences proved challenging for patients and survivors well beyond the treatment phase, requiring an attentive, coordinated, multidisciplinary approach to care.
“When a patient is diagnosed, they receive a lot of attention and care coordination—and rightfully so. We want to make sure we get the diagnosis right, the treatment right, and give them the best chance at surviving their cancer,” said Dr. Penedo. “But once that primary treatment phase ends, we don’t want patients to feel like they’ve fallen off a cliff.” He emphasized that survivors are coping with not just the physical adverse effects of treatment, but the emotional and practical consequences of being treated for cancer; namely, anxiety and depressive symptoms, fear of recurrence, and financial toxicity.
Another key concern in survivorship care is addressing nutrition, physical activity, and other aspects of a healthy lifestyle. Understandably, these healthy habits often fall to the wayside while active cancer treatment becomes a patient’s main priority, despite these lifestyle factors being critically important to both quality of life and health outcomes.
Together, these factors highlight a clear need: a centralized, organized structure for delivering survivorship and supportive care to ensure that patients have the best chance of a good quality of life and optimal outcomes.
In 2012, the Commission on Cancer introduced guidelines to develop and implement a survivorship care plan for all patients with cancer:
The cancer committee develops and implements a process to disseminate a comprehensive care summary and follow-up plan to patients with cancer who are completing cancer treatment. The process is monitored, evaluated, and presented at least annually to the cancer committee and documented in minutes.⁵
This guideline was later modified from 100% of patients to 50%, as many cancer centers found it difficult to implement survivorship care plans for every patient.
However, this guideline identified a major gap in care coordination for survivors. “When you step out of the health system after treatment, you should know what treatment you received and who your treatment team was,” Dr. Penedo said. “The lack of information and effective communication across treatment teams remains a major issue to this day.”
This is precisely the gap the Sylvester Survivorship and Supportive Care Institute intends to fill. All patients in Sylvester’s health system will receive a comprehensive treatment summary, including not only the treatment they received, but also who was on their care team, guidelines to follow posttreatment, and what is expected of the patient regarding follow-up visits. In addition, the institute provides a thorough patient-reported outcomes assessment and a practical needs assessment to obtain a full picture of the support each patient requires. For example, a patient with diabetes, obesity, or a history of depression will have that information documented in their treatment summary so that providers can offer them tailored resources that are available both within the cancer center and the community.
“We want to ensure that those other areas of life are being taken care of, not falling to the wayside due to a focus on disease activity and the patient’s response to cancer treatment,” Dr. Penedo said.
In practice, unifying survivorship services under a single institute has come with challenges. For one, the Sylvester Survivorship and Supportive Care Institute includes 11 disciplines, from psychiatry and rehabilitation medicine to music therapy and art therapy. But the common ground across these facets of care is an underlying desire to provide optimal care for survivors.
Dr. Penedo shared that one of the chief challenges of this undertaking has been creating the culture and understanding of what survivorship and supportive care are and what they are not. “There’s often a misconception that there’s going to be a transfer of care—that the patient is not going to see their oncology team anymore because they’re moving into the survivorship treatment phase,” he noted. Perhaps over a decade ago, that idea was prominent in this space. But today, the institute uses an adjunctive care model with the oncology team. Patients don’t get transferred to survivorship care: They access these services in parallel with their existing oncology care teams.
Creating that understanding with both patients and the oncology team was a challenge at first. But once providers saw the extensive list of ancillary services that would become available to their patients through the institute, the decision to work in tandem was easy. The vision for the Sylvester Survivorship and Supportive Care Institute did not develop overnight; it needed to be refined according to patient needs and wants. When Dr. Penedo’s team first conceptualized their idea, they envisioned an independent survivorship clinic separate from the sites where patients would receive their medical treatment.
“This approach was somewhat idealistic and unrealistic,” he said. “Patients were wondering if they would be seeing their oncology care teams again and whether they were being transferred out of the oncology clinics. We had to rethink it and design a system that fully integrates survivorship practices within the site disease group.”
The advanced practice provider (APP)-led Survivorship Wellness Clinics that emerged are fully aligned with a physician lead from each site disease group, creating a sense of ownership and familiarity with the treatment teams that work with the patient. This coordination is key to ensuring efficient communication between oncology and survivorship and to shifting patient perceptions to view survivorship not as a separate entity, but as a fully integrated approach to care.
With 11 locations across South Florida, it’s important to Sylvester staff that each of its services is available everywhere—an increasingly difficult task with oncology workforce shortages. Telehealth offerings have been key to creating a seamless experience for patients, regardless of where they go, especially for initial appointments to review the survivorship care plan. Prior to this first visit, patients complete a questionnaire called My Wellness Check: a detailed patient-reported outcomes assessment platform that assesses key areas of concern, such as depression, anxiety, fatigue, pain, and physical functioning. The platform also addresses practical needs, including transportation, childcare, finances, stress management, education, food insecurity, and nutrition.
These data inform the survivorship care plan and guide the virtual referral process, helping patients feel well-connected while preventing unnecessary travel. Though not every supportive care service is available via telehealth, many of them are, and the availability of virtual care contributes to cost savings without sacrificing quality of care.
A central goal of the Sylvester Survivorship and Supportive Care Institute is to provide precise, targeted care at the right time, at the right level, to the right patient—a concept referred to as risk-stratified care. The My Wellness Check program has been an important step in that mission, as it not only informs survivorship care plans but serves as a triage mechanism to capture signs that a patient is decompensating in one area or another. “We’ve demonstrated that engagement with completing the assessments through the platform is associated with lower hospital visits and lower hospital readmissions, which are critical outcomes for our health system—there’s certainly a cost savings component there,” Dr. Penedo said.
Similarly, his team has found that unmet needs such as unmanaged fatigue, financial concerns, or practical issues such as transportation are associated with more emergency department visits and rehospitalizations. With My Wellness Check in place, the institute can better assess patient needs and deliver timely services that can improve hard clinical outcomes. In addition to My Wellness Check, the institute has conducted a quality improvement initiative that leverages machine learning and large language models (LLMs) to develop risk algorithms using health system data from 27,000 unique patients. The goal of this AI initiative is to develop these algorithms to a level of sophistication and specificity that they can reliably predict which patients are likely to decompensate earlier vs later—beyond obvious indicators such as the presence of advanced or metastatic disease. This approach is intended to analyze the interplay of drivers of stress: a history of depression, comorbidities, and medications, as well as patient notes that providers input into the electronic health record (EHR), such as low treatment adherence or the presence of toxicities.
A thorough analysis of these factors is only feasible with AI. The algorithm’s ability to consider such a wide array of clinical data, patient-reported outcomes, and social drivers of health can signal that a patient is at risk, allowing providers to identify earlier in the treatment trajectory that a patient requires additional assessment or more comprehensive supportive care services. Early findings from this work suggest that symptom burden trends identified via LLMs among 25,000 Sylvester patients nearly doubled the predictive ability to identify patients who decompensate following treatment relative to using clinical data alone.⁶
Dr. Penedo also affirmed the importance of close collaboration with hospital administrators for an undertaking like the Sylvester Survivorship and Supportive Care Institute, stating that these staff members need to be engaged in planning and feasibility discussions from the outset of a new operation or service, as they typically control the health system’s budget. For Sylvester, the institute was developed over several years and followed a dissemination-implementation model that engaged the necessary stakeholders throughout the process.
“Nobody is going to argue that providing nutrition education and psychosocial support is a bad thing,” said Dr. Penedo. “Everybody agrees that it’s a good thing. But what impact does it have at the end of the day—not only for the patient, but for health systems that have to be very judicious about where to place their resources?”
The institute’s integrated, multidisciplinary approach improves the overall quality of care for survivors compared to traditional follow-up models, firstly because this structure allows oncologists to be entirely focused on patient care. Oncologists have limited time with patients, with about 20 minutes for direct face-to-face encounters. With a comprehensive set of survivorship and supportive care services in place, the institute manages patient issues that may go unattended by the health system and ensures that when the patient sees their oncologist, that time remains dedicated to diagnostics, biomarkers, disease activity, and imaging. Issues such as a lack of reliable transportation, questions about diet and nutrition, or persistent fatigue are addressed outside of the encounter so that the patient and oncologist can focus solely on oncological care.
A burgeoning body of research demonstrates the positive impact of wellness clinics and supportive therapies on long-term patient outcomes, including improvements in quality of life, treatment adherence, and cost savings—both for patients and the health system.⁷⁻⁹ From nutrition and physical activity to art therapy and acupuncture, there are clear benefits for patients. What’s needed in this field is an implementation model to integrate these services effectively within a clinical setting. “Making these services the standard of care would be ideal,” said Dr. Penedo. “But if not that, then making them available as a standard of care for the patients we identify that would benefit the most from these services.”
This outcome is a priority for the Sylvester Survivorship and Supportive Care Institute: documenting both how the institute implemented its services and showing their benefit as part of an integrated health system. Sylvester’s aforementioned quality improvement initiative will be key to demonstrating the significant benefits of supportive care services, as it will enable a closer examination of their interaction with disease activity. “We won’t be limited to recurrence, progression, or secondary cancer,” Dr. Penedo explained. “We’ll see biomarkers over time, and whether engaging in supportive care services also had an impact on physiological and physical health outcomes.”
Though Sylvester is still collecting these data, there is already a wealth of anecdotal evidence from patients who credit the institute with life-changing experiences. “The services we offer feel like a safe space for them—a place where they can get some comfort and some respite from the physical challenges and fear of recurrence that accompany treatment,” Dr. Penedo said.
Unfortunately, while many patients benefit from the institute, it is not uncommon for patients to report being unaware of these services. Getting the word out about the institute to the point that it is recognized at the patient level is not always easy. Dr. Penedo noted that, in many cases, patients are very anxious when they are first diagnosed and discussing treatment planning. “If you tell them, ‘Let’s talk about fatigue or emotional well-being,’ many patients don’t want to hear that,” he said. “They often want to focus on treating their cancer and surviving, and of course, we completely understand that.”
Therefore, working with Sylvester’s Patient and Family Advisory Council to effectively market the institute and its services is a top priority for Dr. Penedo’s team, with patient stories at the forefront of this approach. Taking care to mention the availability of supportive care services multiple times through multiple members of the care team is also key in raising patient awareness.
Sylvester’s providers have also benefited from the institute’s structure and resources. Firstly, the presence of supportive care staff allows clinicians to offload tasks they’re not necessarily equipped to perform during patient encounters and focus wholly on the treatment itself. In addition, the Sylvester Survivorship and Supportive Care Institute creates a space for the multidisciplinary team to come together and interact with individuals they would otherwise not have the chance to meet. For instance, surgeons at Sylvester are now working closely with art therapists, nutritionists, and psychosocial counselors to deliver well-rounded care that addresses all the patient’s needs—not just treatment-related needs.
This collaboration among multidisciplinary teams also breeds new research opportunities. Dr. Penedo described a study at Sylvester investigating the benefits of music therapy in tandem with stem cell transplants, which necessitated new collaborations across the institution. “It’s a case where the whole is greater than the sum of its parts,” Dr. Penedo said. “When you bring all these components together, it’s done in pursuit of a broader vision and a broader capacity, and that leads to new opportunities in research and elsewhere.”
The success of this collaboration and the proof-of-concept study have now opened the opportunity to integrate music therapy into other disease sites. The integration of holistic supportive care services and first-line clinical treatment ultimately sets patients up for the best outcomes possible.
Understanding the importance of engaging community physicians in survivorship care planning, the Sylvester Survivorship and Supportive Care Institute is using its dissemination implementation grant from the National Cancer Institute to export what it has learned in its clinic ecosystem about delivering supportive care to federally qualified health centers, which are primary care clinics serving primarily underserved communities. The institute has also developed and launched the CME-accredited Primary Care Providers Cancer Survivorship Training Program, available to physicians and advanced practice providers at Sylvester. The program includes 12 modules covering common comorbidities seen in survivorship populations, including diabetes, hypertension, obesity, and arthritis. In addition, it discusses the basics of different treatment types for major cancers, such as the long-term effects of endocrine therapies, radiation, and chemotherapy.
Because cancer is not just one disease, this program is fairly high-level. “What we’re trying to get across is the understanding that cancer survivorship doesn’t exist in a vacuum,” Dr. Penedo explained. “It’s intertwined with primary care, and these physicians are on the front lines of identifying what adverse experiences—such as pain, fatigue, anxiety, depression—the patient is experiencing and how we can manage them.” Aside from the training program, the institute provides both patients and primary care providers with detailed information specific to the treatment they are receiving to help anticipate potential adverse events.
The institute also has plans to hire a primary care physician within the internal medicine group who will be dedicated solely to cancer survivorship. That person will not only see patients referred from the cancer center who need a primary care provider but will also have a leadership role in educating the health system on survivorship care within the internal medicine and family medicine departments. Forging this connection among oncology, survivorship, and primary care is key to better overall care coordination, greater awareness of what the Sylvester Survivorship and Supportive Care Institute offers, and patients’ peace of mind. “Patients and their oncology teams get very attached to one another. This helps smooth the transition of care, so patients don’t feel like they’re being abandoned by their oncologist posttreatment,” Dr. Penedo said.
Also top of mind for the institute is the necessary multidisciplinary collaboration to ensure seamless monitoring and follow-up for cancer survivors. When patients are diagnosed with a new condition or comorbidity, it may necessitate a different angle of supportive care. “Care plans have a lot to do with this collaboration, but they can be static,” Dr. Penedo noted. “We’re working on a system that facilitates bidirectional communication between survivorship and primary care and updated patient-level clinical data so that we can quickly adapt to patient needs.”
When considering the evolution of survivorship and supportive care services, Dr. Penedo foresees a significant role for technology-enabled interventions and AI, and not just for risk stratification. “It’s unavoidable that we’ll have to rely on AI and technology to deliver select supportive care services,” he stated. While psychotherapy must remain outside the realm of AI for a host of reasons, Dr. Penedo described the potential for an agentic AI agent with strong guardrails and control mechanisms that can deliver templated material specific to a patient’s treatment. For example, if a patient describes feelings of depression or anxiety that their cancer will recur, the AI agent—having access to the patient’s medical history in the EHR and evidence-based, guideline-concordant tools and materials—can provide targeted patient education materials based on their experience with cancer.
Dr. Penedo underscored that this education is neither the equivalent of nor a replacement for psychosocial care provided by a trained professional, but it would provide an opportunity for capacity building in a time when it is desperately needed. “There are challenges with AI that we cannot ignore,” Dr. Penedo said, “but it will not replace care. It will act as an adjunct to care.”
Survivorship care does not and cannot exist in a vacuum. To ensure continuity of care for patients, supportive care services must work in tandem with active treatment and rely on thoughtful coordination among oncology, survivorship, and primary care. Sylvester has done just that, and the Sylvester Survivorship and Supportive Care Institute stands as a model of what can be achieved when infrastructure is driven by patient needs and a commitment to holistic cancer care.
Rachel Radwan is Associate Editor of Oncology Issues and Manager of Editorial Content and strategy for the Association of Cancer Care Centers in Rockville, Maryland.
