Survivorship standards help address the distinct needs of adult cancer survivors

With the number of adult cancer survivors in the United States expected to reach 23 million by 2032, the long-term needs of this population are growing yet often poorly understood and addressed.

A new survey study of cancer care facilities accredited by the American College of Surgeons (ACS) Commission on Cancer (CoC) indicates that having survivorship standards in place helps centers provide services that meet the distinct needs of cancer survivors. However, only a minority of patients likely receive access to such services, and certain specialized services for addressing fertility and sexual health concerns are lacking the most.

“We found that most institutions actually have a reasonable number of survivorship services available to their patients—that’s encouraging because it means we have a foundation to work with when trying to advance survivorship care,” said David R. Freyer, DO, MS, senior author of the study and director of the cancer survivorship programs at Children’s Hospital Los Angeles and the University of Southern California (USC) Norris Comprehensive Cancer Center.

“Where we started to see differences is in which specific services were available and how institutions provide them.”

The study, published this week in JAMA Network Open, establishes a national benchmark for survivorship care delivery at CoC-accredited facilities, which treat more than 74% of all cancer patients across the country.

Since 2015, the CoC accreditation standards have incorporated survivorship care. Beginning in 2021, centers have been required to provide a survivorship program to adults who are being treated for cancer with a high likelihood of being cured.

To determine the prevalence, types, and outcomes of cancer survivorship services available at accredited facilities, Dr. Freyer and USC researchers Kimberly A. Miller, Ph.D., MPH and Julia Stal, Ph.D., collaborated with members of the CoC and ACS Cancer Research Program to understand how cancer programs have implemented their survivorship services, what key challenges they have faced, and what additional resources would help them achieve their goals.

“Treatment throughout the continuum of cancer care, including through survivorship, is paramount to help patients achieve optimal clinical outcomes,” said CoC Chair Timothy Mullett, MD, MBA, FACS, co-author of the study and medical director of the Markey Cancer Center Networks at the University of Kentucky.

“We know that adult cancer survivors may develop a variety of late physical and psychosocial effects from cancer treatment that should be addressed with evidence-based care. Treatment should not end once cancer has been cured.”

Key study findings

Of approximately 1,400 eligible programs, 384 facilities (27.4%) accredited by the CoC responded to the survey. The survey represented all geographic regions and CoC program categories, including academic and community programs. Programs were asked to identify which services (cancer care delivery, clinical care, psychosocial services) they offered to patients at their centers. They include:

• Value of survivorship care standards: A total of 335 programs (87.2%) agreed that the 2021 survivorship standard implemented by the CoC (Survivorship Standard 4.8) helped advance their institution’s survivorship programs. “The take-home message is that the CoC standards work, and are a very important quality metric,” Dr. Freyer said. “We believe that current and future CoC survivorship standards can provide an effective framework for advancing facility-level survivorship care.”
• Broad-spectrum of services: Services most available to survivors included screening for new cancers (87.5%), nutritional counseling (85.3%), and referrals to specialists (84.7%). These survivorship services were usually delivered by cancer treatment teams (63.3%) rather than specialized survivorship clinics (31.3%). Whereas access to specialized survivorship clinics is more common in the pediatric cancer community, such clinics are particularly resource intensive and the authors note that having survivorship care delivered directly by cancer treatment teams may be more feasible for the very large number of adult cancer survivors.
• Fertility and sexual health services are often under-addressed: Survivorship services that address sexual health (57.3%) and fertility (56.9%) were least offered to patients, indicating a need to prioritize these areas and discuss barriers to care, such as limited insurance coverage, suboptimal access to specialists, and more training to better equip oncology providers for discussing these issues with their patients.
• Gaps in care: Programs noted that the most important barriers to patients taking advantage of survivorship services are a lack of referrals to survivorship programs by treating oncologists and low patient awareness of survivorship services when they are available.

Understanding the landscape of these services will contribute to identifying gaps, strengths, and interventional opportunities for improving survivorship care for the large and growing population of cancer survivors, the authors write.

“Our goal is to help institutions advance survivorship programs on the ground,” Dr. Freyer said. “This research demonstrates good participation already in survivorship care at CoC-accredited facilities, so we’re definitely not starting from zero. That’s the good news. The important question is: How do we build on that and help institutions expand the services they offer, enhance their quality, and increase uptake by the survivors themselves?”

Dr. Mullett added, “We look forward to using the results of this study, and others to follow, to improve the effectiveness of our critical survivorship standards. The CoC strives for all of our programs to realize the value of survivorship care for our patients.”

Study co-authors with Dr. Freyer and Dr. Mullett are Julia Stal, Ph.D.; Kimberly A. Miller, Ph.D., MPH; Judy C. Boughey, MD, FACS; Amanda B. Francescatti, MS; Elizabeth Funk, MSW; and Heidi Nelson, MD, FACS.