Study Creates National Benchmark for Cancer Survivorship Care

In the pediatric world, cancer survivorship programs have become a critical part of patient care over the past 30 years. These programs were a response to rising childhood cancer five-year survival rates—now over 85%—and to late effects (health problems caused by the cancer or cancer treatments).

But for adults with cancer—including young adults—survivorship care has not been nearly as well developed or implemented. Now, national efforts are aiming to expand and improve survivorship care for adult cancer patients, based in part on the success of pediatric programs.

Pediatric oncologist and survivorship expert David R. Freyer, DO, MS, of Children’s Hospital Los Angeles, is helping to lead this effort. Recently, he was the senior author of a new study, published in JAMA Network Open, that has established a national benchmark for adult cancer survivorship care.

He also co-authored the first U.S. standards for adult cancer survivorship programs, which were published in April in the Journal of Cancer Survivorship.

Both efforts impact not only those who are diagnosed with cancer as adults, but also children and adolescents who eventually transition to adult care.

“There are close to 20 million five-year survivors of cancer in the U.S., and most of them are survivors of adult-onset cancer,” says Dr. Freyer, Director of the Survivorship and Supportive Care Program in the Cancer and Blood Disease Institute at Children’s Hospital Los Angeles. “That starts to raise the question: What are we doing for them? They’ve survived their cancer, but many live with chronic pain and other symptoms, as well as psychosocial sequelae. We want them, like childhood cancer survivors, to thrive.”

Survey findings

For his newest paper, Dr. Freyer led a collaborative effort with the American College of Surgeons Commission on Cancer (CoC) and Cancer Research Program (CRP) to develop and conduct a national survey of adult survivorship care at CoC-accredited institutions. These centers care for nearly 75% of all cancer patients in the U.S.

Although having some form of a survivorship program is a requirement for CoC accreditation, the programs vary widely in their depth and breadth. The anonymous online survey was designed to better understand the current landscape of adult survivorship programs and establish a benchmark for this care in the U.S.

The group received responses from 384 institutions representing the spectrum of cancer treatment facilities, including urban, rural, academic and community-based programs. The survey found that:

• More than 80% of programs provide what Dr. Freyer calls “the basics.” These services include screening for new cancers, referrals to specialists for late effects, and nutritional counseling.
• Other services were less common. Only slightly more than half of centers offered fertility preservation/restoration services—a major need for young adults—and sexual health programs. In addition, only 46% of respondents provided survivorship care plans to patients.
• While 90% of respondents agreed that the survivorship care they provide is important, the same 90% reported that few patients receive it—often due to lack of patient referrals and awareness.

“There’s a striking disconnect between the perceived value of this care and how many patients are actually benefiting from it,” says Dr. Freyer, who conducts extensive research into survivorship issues, particularly those affecting adolescents and young adults. “The good thing is that this is an actionable item. The next step is to begin closing that gap by understanding in more detail the specific barriers that stand in the way of patients getting the survivorship care they need.”

New survivorship standards

The survey results come just three months after the publication of the first U.S. standards for adult survivorship care.

The creation of these new standards was led by the National Cancer Institute and Department of Veterans Affairs, which convened a panel of more than 30 national experts in survivorship care. Dr. Freyer was one of those experts and a co-author of the publication.

The group established 30 comprehensive standards, including:

• Developing a survivorship program
• Stratifying survivors based on age and risk
• Training the providers who deliver this care
• Creating processes for evaluating survivors’ outcomes and experiences
• Having a budget and funding for survivorship care

That last point is particularly important, Dr. Freyer says. “Increasing the number of institutions around the country that offer meaningful survivorship programs is important,” he says. “But for this to be sustainable in today’s challenging fiscal environment, it’s critical to assist institutions with developing a realistic business plan and to advocate for health insurance plans to cover survivorship services.”

He adds that the standards and survey results represent an encouraging starting point to further grow and develop cancer survivorship care for adults.

“It’s now well recognized that survivorship is an essential part of cancer care for adults as well as children,” Dr. Freyer says. “Our goal now is to help centers develop more robust services, expand them to more patients, and thereby improve the quality of life for millions of adult cancer survivors.”