Expanding Definition of Cancer Survivorship Highlights Need for New Standards

“As we were delivering survivorship care plans and discovering survivors concerns, we really noted gaps in our internal resources, and we just wanted to offer more,” Sweeney noted.

The development of a survivorship program at a community health system has shown promise in utilizing survivorship standards as a road map to collaborate across the multidisciplinary approach, according to Tara Sweeney, BSN, RN, OCN, CHPN.

“As a community health system with limited resources, using survivorship standards as our roadmap and collaborating across our disciplines to really discover our mutual goals has been really fundamental to our program development, from IT to community health to even spiritual care,” Sweeney, lead oncology nurse navigator and Survivorship Program coordinator at Main Line Health, said during a presentation at the 50th Annual ONS Congress, where she discussed the evolving landscape of cancer survivorship, as well as a more detailed approach to Main Line Health’s survivorship program.

Defining Survivorship

To highlight the increasing need for survivorship care plans, Sweeney noted that, in 1992, there were 7 million people living after a cancer diagnosis; in 2022, that number jumped to 18.1 million estimated survivors.

“With early detection, emerging therapies and our aging population, more people are being diagnosed, treated, and are living with cancer,” she added. “In the next 15 years, the number of survivors is expected to reach 26.1 million, and that’s pretty cool.”

The changed landscape has also been a result of redefining the definition of survivor in cancer care. “As cancer care evolves, so has survivorship, and really the way that we define it,” Sweeney said, adding that less than a decade ago, survivorship was the focus on the health and life of a person with a history of cancer beyond the acute diagnosis and treatment phrase.

Now, survivorship focuses on an individual from the time of a cancer diagnosis throughout their entire life, and also includes family, friends, and caregivers as part of the experience.

“Thankfully, today, there is a more unified consensus, and many organizations have expanded their definitions to acknowledge the impact a cancer diagnosis can have throughout a person’s lifetime,” Sweeney noted.

Further, historically, survivorship was staged differently with its own characteristic timeline as well. In 1985, Fitzhugh Mullan, MD, defined 3 stages of survivorship: acute (diagnosis and treatment), extended (post-treatment and active surveillance), and permanent (long-term). However, in 2021, the National Cancer Institute defined metastatic survivorship, “really giving a voice to the complex needs of survivors living with a metastatic cancer, and also exploring research opportunities in this stage as well,” Sweeney added.

More recently, survivorship care plans have become a reality for institutions; however, most still focus on caring for survivors who are transitioning into extended survivorship after completing a curative treatment, according to Sweeney.

Therefore, she and her colleagues focused on systemic collaboration at Main Line Health. “We’re a community health system. We have 4 acute care hospitals, and we partner in care with many independent outpatient practices,” Sweeney shared. “So our big question is: How can we best care for the health and well-being of a person across all stages of their survivorship?”

“As we were delivering survivorship care plans and discovering survivors concerns, we really noted gaps in our internal resources, and we just wanted to offer more,” Sweeney continued.

Survivorship Care Collaboration

Sweeney’s team created a small committee to dive deeper into their survivorship care plans to meet the needs of patients across the cancer continuum.

“Our initial goals were to expand our more siloed hospital-based approach into a system-wide collaboration,” Sweeney said. “We wanted to mitigate the needs and enhance services for our survivors and really the community that we serve as well.”

With this, the system collaboration included the evaluation of survivor needs and current survivorship services, the expansion of their system approach and community, and education of patients through a seminar series led by experts.

With the goal of supporting survivors from diagnosis, the primary focus is on active, extended, and metastatic stages of survivorship. In 2019, their system-wide survivorship program team added the inclusion of a program coordinator, nurse navigators, social workers, and oncology leadership.

In 2021, the team added a focus on community health, followed by a rehabilitation focus in 2022, and oncology nutrition in 2025. The team meets every other month to discuss goals, evaluate services, plan programs, and collaborate on barriers. The team then also selects 3 services per year to focus on, including mental health, support groups and services, financial support, and integrative therapy, and those specific workgroups meet monthly.

“Our goal for each of these services is to further assess our survivors’ experiences across our system, discuss the barriers, identify internal and external resources, and develop initiatives to really expand that service as we identify the needs,” Sweeney explained.

She concluded by noted that ongoing challenges have still included changing accreditation standards, resource limitations, and quantifying the team’s impact. However, she added, the opportunities make it worth the while.

“We developed initiatives for our program through exploring the evolving standards and research. Several new survivorship guidelines have been published recently, which really helped give us a framework for quality care….Our system is also collaborating on an initiative to minimize disparities in cancer care,” Sweeney said.

“Continuing to redefine survivorship care is definitely worth all those challenges and some work, resources, and references.”

Reference

Sweeney T. Redefining survivorship care: Using standards as a road map. Presented at: 50th Annual ONS Congress; April 9-13, 2025; Denver, CO.