There are an estimated 19 million cancer survivors in the US, a number that is steadily increasing due to advances in cancer treatment.1 Unfortunately, many long-term cancer survivors endure uncomfortable side effects resulting from treatment, which reduce quality of life and may lead to premature death. Consequently, cancer survivorship is now recognized by the National Cancer Institute (NCI) as a crucial part of cancer care to ensure that patients receive appropriate monitoring, management, and support following treatment.2
In 2015, the ACS Commission on Cancer (CoC) introduced CoC Survivorship Standard 3.3 as a requirement for cancer programs to receive CoC accreditation. This survivorship standard, the first of its kind in the US, was focused on having programs provide survivorship care plans (i.e., cancer treatment summary and care recommendations) to their patients. In 2021, the standard was revised, and CoC Survivorship Standard 4.8 now requires that facilities offer a survivorship program for cancer patients treated with curative intent to ensure survivors receive high-quality care following treatment.
With 74% of all cancer patients in the US treated at CoC-accredited facilities, this presented a novel opportunity to investigate the types and availability of survivorship services on a national scale. In early 2022, the Survivorship Services Survey was developed through a collaboration between researchers from the University of Southern California and the ACS (CoC and Cancer Research Program). The study was an anonymous, online, cross-sectional survey conducted in May 2023 at 1,400 eligible CoC institutions representing diverse characteristics, geographic regions, and practice types. Questions included self-reported survivorship program components, availability of services covered under the CoC Survivorship Standard 4.8, and institutional perceptions of the impact of their survivorship programs. Findings from the completed study were recently published in the journal JAMA Network Open.3
Responses from 384 programs, which proportionately represented all eight CoC program categories eligible to participate in the study, were both illuminating and, in some cases, unexpected. The results showed that more than 80% of programs currently provide “the basics” of survivorship care–such as screening for new cancers, referrals to specialists for late effects, and nutritional counseling. Less commonly available was the provision of survivorship care plans, sexual health programs, and fertility preservation/restoration services.
Investigators also found that in about 60% of programs, survivorship services were delivered by the same team of oncology doctors and nurses that treated the patient’s cancer, rather than by a specialized team in a separate survivorship clinic. When programs were asked what resources were most needed to expand and enhance survivorship care at their sites, respondents prioritized having more advanced practice clinicians (nurse practitioners or physician assistants) with survivorship expertise, and information technology to leverage their electronic health record systems for survivorship care.
Some of the most compelling insights revealed by the survey were from the institutions’ perceptions of the value provided by their survivorship programs. While more than 80% of programs endorsed their survivorship services as beneficial for patients, they also felt only a small minority actually receive the services offered. Further, survey respondents reported that the primary barriers to survivorship care were the dual problems of few referrals from the cancer treatment teams and a lack of patient awareness of such services. Notably, nearly 90% of programs endorsed CoC Survivorship Standard 4.8 as having facilitated initiation or advancement of their survivorship programs.
These survey results have established a benchmark for survivorship care delivery for adults in the US, which has never been examined on a national scale. This study also has identified gaps in specific services and opportunities for intervention. These results will contribute to tracking future progress and trends in cancer survivorship care nationally. Importantly, as the Survivorship Services Survey was being conducted, leaders at the NCI Office of Cancer Survivorship worked with experts around the country to develop the National Standards for Cancer Survivorship Care, which provide guidance for institutions seeking to improve care for cancer survivors.4 As the results of this study align with the new national standards, the authors are continuing to collaborate in developing a grant-funded study to build on these results to help cancer treatment centers expand their survivorship services.
