Most cancer care programs offer ‘basics’ of survivorship care, but gaps remain
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Key takeaways:
- Most cancer survivorship programs offer specialty referrals, cancer screenings and nutritional counseling.
- Fewer programs offered survivorship care plans, or sexual health and fertility services.
Most cancer care programs offer some survivorship services, but many patients do not use them due to lack of referrals or low awareness of their existence, according to survey results.
New cancer screening, nutritional counseling and referrals to specialists are common services provided. However, several programs do not offer survivorship care plans, treatment summaries, or sexual health and fertility services.
“We were somewhat surprised but pleased to see that many institutions provide ‘the basics’ of survivorship care,” David R. Freyer, DO, MS, director of the survivorship and supportive care program at Children’s Hospital Los Angeles, told Healio. “The most surprising finding was the perception of almost 90% of institutions that although the survivorship services they provide have great value for cancer survivors, a low percentage of survivors actually access them.”
Background and methods
The number of cancer survivors in the U.S. — which exceeded 18 million in 2022 — is expected to reach 22.5 million by 2032; according to study background.
More than two-thirds of individuals diagnosed with cancer live at least 5 years.
“Cancer survivorship care is well established in pediatric oncology as a routine part of the long-term care of childhood cancer survivors,” Freyer said. “However, survivorship care for survivors of adult-onset cancer is much newer and less well developed.”
Researchers conducted a cross-sectional survey of American College of Surgeons Commission on Cancer (CoC)-accredited programs — which treat more than 70% of newly diagnosed patients in the U.S. — to assess availability and types of cancer survivorship services for adults with cancer.
The CoC has made survivorship care part of its accreditation criteria since 2015.
The most recent update specifies the need to appoint a survivorship program coordinator, develop a multidisciplinary survivorship program team and establish a list of services — offered either by referral or onsite — to address cancer survivors’ needs. Programs are required to provide annual documentation of at least three services and their impact.
The survey by Freyer and colleagues inquired about 15 different survivorship services.
About one-quarter (27.4%) of 1,400 eligible programs responded.
Results and next steps
The majority of respondents’ survivorship service teams included nurses (87%), social workers (72.4%) and program coordinators (71.6%). Only 22.7% of respondents’ teams included occupational therapists.
More than 90% of programs offered 11 of the 15 services to at least some survivors, and more than 80% offered eight services to all survivors.
The most common services offered to all survivors included formal specialist referrals (95.6%), screening for new and/or recurring cancers (87.5%), nutritional services (85.3%), rehabilitation (84.6%) and genetics counseling (80.7%).
The least common services offered to all survivors included survivorship care plans (43%), fertility (56.9%), sexual health (57.3%) and treatment summaries (64.7%).
Cancer treatment teams delivered services at most programs (63.3%).
Survivorship clinics offered services in 31.3% of programs.
The survey asked respondents to identify the most-needed resources to improve survivorship care. Top responses included more advanced practice clinicians with “dedicated survivorship effort” (53.4%), survivorship upgrades to electronic health record systems (48.2%), more patient referrals from cancer treatment clinicians (44.8%) and greater awareness of offered services (43.5%).
“The most glaring gap was the huge disconnect reported by institutions between the high value of survivorship services they provide and their low level of uptake,” Freyer said. “Another very important gap was the reported need for institutions to assign a higher priority and more resources to survivorship programs so they can expand and enhance what they do.”
Researchers acknowledged study limitations, including potential response bias and the low survey participation rates.
Future research should investigate the barriers to survivorship care, Freyer said.
“Some institutions are doing survivorship care well, and their ‘best practices’ need to be shared with institutions wishing to expand and enhance their services,” he said. “The most important things are to educate institutional leaders on why survivorship care is so important and the standard of care, support institutions in developing business plans so they can be sustainable to offer, and advocate more effectively for health insurance plans to cover these services as routine for appropriate survivorship care. The solution must be multilevel and cannot simply be telling institutions this is what they need to do.”
The findings establish “a benchmark” for survivorship care for the future, Larissa Nekhlyudov, MD, MPH, clinical director of internal medicine for cancer survivors at Dana-Farber Cancer Institute, professor at Harvard Medical School and internist at Brigham and Women’s Hospital, and colleagues wrote in an accompanying editorial.
“It is incumbent on the oncology community to continue to focus on ensuring that such high-quality cancer survivorship services are attainable for all who need it, specifically individuals who may not be empowered to seek such services, those who may not be aware that their current or future medical conditions and symptoms may be related to their cancer treatment, and those who may feel — often correctly — that survivorship services do not include them,” they wrote.
For more information:
David R. Freyer, DO, MS, can be reached at dfreyer@chla.usc.edu.
References:
- Nekhlyudov L, et al. JAMA Netw Open. 2024;doi:10.1001/jamanetworkopen.2024.18686.
- Stal J, et al. JAMA Netw Open. 2024;doi:10.1001/jamanetworkopen.2024.18736.
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