Individually Optimizing Cancer Outcomes Through a Mission of Survivorship Care

Overall, to Andrew M. Evens, DO, MBA, MSc identified 4 major areas of focus regarding cancer survivorship care: recurrence and new cancers, long-term and late effects, modifiable health behavior, and coordination of care.

Cancer survivorship care may be a neglected phase of the cancer treatment trajectory, according to Andrew M. Evens, DO, MBA, MSc, which raises questions on how to prevent patients from becoming “lost in transition” as they switch from pediatric to adulthood survivorship.

In a presentation at the 2024 Annual Oncology Clinical Practice and Research Summit, Evens, deputy director for Clinical Services at Rutgers Cancer Institute and the system director of medical oncology and the oncology lead at RWJBarnabas Health Medical Group, and the associate vice chancellor for Clinical Innovation and Data Analytics at Rutgers Biomedical and Health Sciences, moderated a discussion on how his institution aims to optimize the scale and scope of cancer survivorship.¹

As part of the session, Evens was joined by the following colleagues:

• Peter Cole, MD, Embrace Kids Endowed chair and chief of the Division of Pediatric Hematology and Oncology at the Rutgers Cancer Institute;
• Louise Ligresti, MD, chief of Cancer Survivorship, codirector of the Cancer Survivorship and Outcomes Center at Rutgers Cancer Institute, and professor of medicine at Rutgers Robert Wood Johnson Medical School;
• and Sharon Manne, PhD, professor in the Section of Behavioral Science at Rutgers Cancer Institute and Robert Wood Johnson Medical School, as well as a codirector of the Cancer Survivorship and Outcomes Center.

Cancer Survivorship at a Glance

Evens contextualized the discussion by highlighting statistics related to the growing number of cancer survivors across the US.

Data have shown an estimation of 18.1 million survivors of cancer across the US as of January 2022. This proportion comprises approximately 6% of the adult population. Additionally, Evens described how the number of estimated cancer survivors was anticipated to rise to 26.0 million by 2040.

When focusing on pediatric cancer survivors, specifically, approximately 496,000 individuals had a cancer diagnosis before the age of 20 years in 2022. Of the pediatric populations with cancer, 85% were alive at least 5 years following their diagnosis, and two-thirds of childhood cancer survivors experienced chronic illnesses following anti-cancer therapy. According to Evens, these pediatric patients have experienced a variety of physical or multi-organ, emotional, and cognitive late effects following their cancer treatment.

When cancer survivors transition from childhood to adulthood, however, they may become “lost in transition” as they navigate care for potentially recurrent disease. He described how few guidelines provide recommendations for follow-up care for pediatric patients transitioning to adulthood, and that providers may lack sufficient education and training to treat this population. Additionally, Evens noted a lack of coordination between cancer specialists and primary care providers when treating this subset of cancer survivors.

For example, when zeroing in on Hodgkin lymphoma, Evens noted that although the rate of cancer-related mortality has plateaued among Hodgkin lymphoma survivors with increasing follow-up time, this population has experienced significantly increased mortality due to non–cancer-related causes.²

“Unfortunately, [this increase] is a little bit due to the cancer itself; a lot of it due to the treatment. Yes, we're trying to move away from chemotherapy; anthracyclines can damage the heart and [increase] other causes [of death],” Evens stated. “[There is] significantly increased myocardial infarction, bowel disease, lung disease, kidney disease, infections, and psychiatric illnesses. I don't want to say it's an epidemic, but they have significantly increased across the board. So, the question is, how are we handling it as a health system?”

Overall, Evens identified 4 major areas of focus regarding cancer survivorship care: recurrence and new cancers, long-term and late effects, modifiable health behavior, and coordination of care.

Navigating the Complexity of Survivorship Care

During a Q&A session with the above-mentioned panelists, Manne described how cancer survivorship encompasses an extremely long life span, especially among those who are younger or comprise the growing adolescent and young adult (AYA) population. Additionally, the late effects following prior anti-cancer therapy can extend beyond an initial monitoring period, as medical and psychosocial effects can occur at any time, especially within the first 5 years after treatment.

From a clinical perspective, Manne said that the transition of care applies not only to the patients but to providers, as well. Noting that the area of survivorship care may be underfunded, she explained how differing models of care creates a disconnect in how institutions provide treatment to survivors.

“There's no good agreement between oncology care providers and community providers on who should be providing care, which adds to the complexity and the difficulty of treating [survivors] effectively,” Manne said.

The group also discussed the specific challenges associated with treating AYA populations, which the National Cancer Institute (NCI) defines as those who are 15 to 39 years old.³

Cole highlighted some unique aspects of AYA patients with cancer who receive treatment. First, compared with other groups, AYA populations are the least likely to undergo treatment as part of a clinical trial or at an academic medical center. These survivors do not appear to experience the same improvement in outcomes observed for other patients across the spectrum.

“Moving into the survivorship period, adolescents and young adults have psychosocial needs that are distinct from pediatric patients and older adults. In addition to the unique susceptibility to medical complications, the financial toxicity and the social and psychological tolls placed on these young adults make their cancer trajectory different,” Cole elaborated. “In the absence of a dedicated psychosocial support system [and lack of] experience in taking care of adolescents and young adults, they tend to fall through the cracks and not get the care they need.”

Forming a Mission of Survivorship Care

As part of addressing the gaps and obstacles that the panelists described during the Q&A session, Evens illustrated a mission of survivorship care at their institution that is intended to foster individualized, evidence-based practices to improve quality of life and outcomes among cancer survivors. This initiative also entails the objective of aiding clinically integrated survivorship outcomes research while identifying other unmet needs and disparities across various populations.

Regarding pediatric care, Rutgers Cancer Institute features the Long-term Information Treatment-Effects Evaluation (LITE) program, which is designed to provide long-term evaluation, support, and health education for childhood survivors of cancer.⁴ Physician-led teams at pediatric survivorship clinics provide multidisciplinary care that includes the assistance of dedicated advanced practice nurses, psychologists, social workers, and subspecialists via referral.

All pediatric patients at the institution receive a “Passport for Care,” which is a set of expectations for survivorship care partly informed by NCI and Children’s Oncology Group Long-Term Follow Up guidelines. At 10 years after a patient completes therapy for their cancer or becomes 28 years old, whichever occurs later, a primary care physician retakes control of survivorship care.

The institution also employs 2 types of care models for adult survivors of cancer, which include consultative care and longitudinal care models.

As part of the consultative model, patients receive a 1-time visit in a survivorship clinic at 6 to 12 months after finishing their initial course of anti-cancer therapy. This model aims to provide a road map for survivorship care, as adult patients are eligible to follow up with a primary oncology team once or on an annual basis.

Instead of administering treatment in a primary oncology clinic, the longitudinal care model transfers responsibility to the adult survivorship provider. The presentation noted that this strategy is more suitable for patients who are no longer receiving any cancer-directed treatment, although this condition is not required.

A survivorship visit at Rutgers Cancer Institute may involve several processes, including a review of medical history and treatments, comprehensive physical exams and testing whenever necessary, and patient-reported outcomes. Additionally, this survivorship care plan offers distress assessments and emotional support, counseling on healthy living habits, management of treatment-related toxicity, and referrals to other medical specialties and support services.

As part of meeting the physical and psychosocial needs of cancer survivors, the institution also offers support services associated with areas including nutrition, exercise, rehabilitation services, genetic counseling, smoking cessation, financial services, and cardio-oncology. In order to generate evidence that can adequately gauge the impact of these survivorship-related services, Evens highlighted various program metrics, such as number of visits, visit levels based on complexity and time, recurrent cancers detected, second primary diagnoses, referrals to support services, and patient satisfaction surveys.

References

1. Evens A, Cole P, Ligresti L, Manne S. Cancer survivorship: scale, scope, and partnerships for patient-centered care. Presented at the 2024 Annual Oncology Clinical Practice and Research Summit; November 15-16, 2024; New Brunswick, NJ.
2. De Vries S, Schaapveld M, Janus CPM, et al. Long-term cause-specific mortality in Hodgkin lymphoma patients. J Natl Cancer Inst. 2021;113(6):760-769. doi:10.1093/jnci/djaa194.
3. Adolescents and young adults with cancer. National Cancer Institute. Accessed December 4, 2024. https://tinyurl.com/mr454dvf
4. The LITE Program. Rutgers Cancer Institute. Accessed December 4, 2024. https://tinyurl.com/mr3vbyrt