Background

It is estimated that there are >18 million cancer survivors in the United States,¹ and there is a growing number of survivorship programs across the country to care for these individuals. Ongoing, lifelong support, tailored to the unique clinical and psychosocial needs of cancer survivors, has been identified as essential within the oncology community and endorsed by major oncology organizations. Definitions of survivorship vary across these organizations, with the National Comprehensive Cancer Network (NCCN) defining an individual as a cancer survivor from diagnosis through the balance of life, including survivors living with cancer and those free of cancer.² The American Cancer Society (ACS) and the National Coalition for Cancer Survivorship (NCCS) provide similar definitions.^3,4 The American Society of Clinical Oncology (ASCO) recognizes that the term “survivorship” means different things to different people, and that it often describes the process of living with, through, and beyond cancer.⁵

Survivorship care is important, because survivors are at significantly increased risk for premature mortality and serious morbidity based on treatment exposures. As survivorship has become a distinct phase of cancer care, guidance on care for cancer survivors has emerged from NCCN and others. The NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) for Survivorship provide guidance for managing the late and long-term effects of cancer and cancer therapies, as well as recommendations for maintaining a healthy lifestyle through and beyond recovery.² These guidelines, coupled with complementary recommendations from ASCO⁶ and ACS,⁷ have formed a roadmap for patients and providers when planning survivorship care. In following this guidance, many cancer centers now include survivorship care plans for patients in the continuum of care. These care plans can help guide the follow-up care for patients who have completed their primary cancer treatment as well as those who may be receiving maintenance therapy. Care plans may include surveillance for recurrent disease, evaluation and treatment of medical and psychosocial consequences of treatment, recommendations regarding screening for new primary cancers, health promotion recommendations, and referrals for specialty care as needed.

The need for survivorship care continues to expand as cancer has become a chronic disease, with people living longer and receiving ongoing treatment and/or follow-up care in oncology practices. As research on traditional and new cancer therapies rapidly evolves, so do data on the late and long-term impacts of certain drugs, radiation, and surgical interventions, further underscoring the clinical need for long-term survivorship care. However, the current shortage of oncologists has increased the challenges in providing high-quality care for the growing number of survivors, alongside individuals with a new cancer diagnosis. Consequently, timely access for new patients with cancer is a problem in many centers. Dedicated survivorship clinics enable individuals who are no longer undergoing active treatment to receive follow-up from health care professionals other than the primary oncologist. Although from a business perspective this allows oncologists more time to see new patients, dedicated survivorship clinics also provide an opportunity for a shift in the care paradigm from acute treatment–based care to a long-term forward focus on prevention and chronic symptom management.

While evidence on the importance of survivorship care and the popularity of specialized clinics expands, many questions remain regarding how to best operationalize the guidance from nationally recognized organizations and clinical practice guidelines. Debate over how to define and measure survivorship care has complicated the planning, design, and delivery of this care at many cancer centers, although case exemplars are beginning to emerge. Still, consensus is lacking on who should provide survivorship care, the point at which patients are eligible for survivorship clinics, and the optimal length and duration of follow-up care.

Thoughtfully designed survivorship clinics, equipped with up-to-date evidence, are needed to plan and deliver the holistic care required to ultimately improve outcomes. Utilizing the expertise of NCCN Member Institutions, we sought to evaluate the current landscape of survivorship clinics, identify opportunities for alignment and areas for improvement, and ultimately help develop a more consistent and defined best practice for survivorship care.

Methods

NCCN is a not-for-profit alliance of 33 leading cancer centers dedicated to improving and facilitating quality, effective, equitable, and accessible cancer care so all patients can live better lives. The NCCN Best Practices Committee (BPC) comprises clinical and administrative leaders from each of these centers, working collaboratively to improve the effectiveness and efficiency of cancer center operations. The BPC frequently selects topics of interest and importance to NCCN Member Institutions to explore through surveys, workgroups, webinars, and meetings. To better understand survivorship clinics at NCCN Member Institutions, the BPC designed a survey. The 13 survey questions (Table 1) included items related to clinic design, clinic staffing, and the referral process.

The survey was piloted by one center for clarity and completeness and was subsequently distributed to all centers through a web-based survey tool (SurveyMonkey). BPC members were instructed to forward the survey to a content expert within their institution and provide one response per institution. Survey responses were collected between February 23, 2023, and March 22, 2023.

Results

Representatives from 24 of the 33 NCCN Member Institutions submitted responses to the survey (73%). Although all responding centers see cancer survivors, the majority (92%) have ≥1 dedicated survivorship clinics. Of those centers with dedicated survivorship clinics (n=22), 9 (41%) reported general survivorship clinics for all cancer types, and 13 (59%) indicated that their center offered ≥1 disease-specific survivorship clinics. All centers with disease-specific survivorship clinics reported a breast cancer survivorship clinic, with the number of disease-specific offerings ranging from 1 to 12. One center that does not currently have a dedicated survivorship clinic has clinics planned for breast, lung, and cervical cancers.

Most centers (55%) use a mix of physicians and advanced practice providers (APPs; nurse practitioners and/or physician assistants) to staff survivorship clinics; however, 9 (41%) are staffed entirely by APPs and 1 (4%) is staffed entirely by physicians. The vast majority (91%) have dedicated scheduling templates, and most (73%) have dedicated clinic space for survivorship clinics.

The referral process for survivorship clinics varies across centers, with 16 (73%) using algorithms, guidelines, or pathways to determine when a patient is referred to a survivorship clinic. Within this group there is variation as to whether these are used for one or all disease-based survivorship clinics. Three centers (14%) use these algorithms to determine whether a referral is required for a survivorship clinic, whereas 9 (43%) always require a referral for these clinics. Another 9 (43%) do not require referrals for survivorship clinics. Tumor type, risk of recurrence, treatment type, and patient preference were all listed in an open-ended question as factors that influence referrals to survivorship clinics. Additionally, the timeline for referral varies both within and across centers, ranging from the completion of treatment to 2 years after the completion of treatment. Centers listed several factors that influence the timing of a referral, including disease site, provider, determination of risk, and patient-specific needs. Centers also reported variation on how long patients are followed through survivorship clinics, ranging from <2 years to an indefinite period. Of those who responded to questions related to follow-up time (n=19), most indicated that patients are followed indefinitely (53%), whereas the second most frequent response was <2 years (21%).

Discussion

Results of the NCCN survey on cancer survivorship care delivery reveal variability in survivorship care across the surveyed academic cancer centers. Centers reported varying definitions of survivorship and components of a comprehensive cancer survivorship program. Although the vast majority of NCCN Member Institutions have a clinical survivorship program, these programs exist on a spectrum, and may reflect the evolution of survivorship care. Initially, cancer survivorship care was focused on posttreatment consultative visits with a provider to review a Treatment Summary and Survivorship Care Plan (TS/SCP). Provisions requiring a TS/SCP contributed to rapid uptake, although they lacked sufficient traction for sustainability. Due to limited demonstratable outcomes linked to the provision of a TS/SCP⁸ and reimbursement barriers for this work, institutions have shifted from TS/SCPs to other metrics for evaluating survivorship care delivery. This survey demonstrates that many academic cancer centers have shifted beyond a one-time survivorship visit toward a more holistic long-term care model.

It is important to note that there are several existing models for providing survivorship care⁹ that can be categorized according to provider type (physician, APP, nurse), provider specialty (specialist, primary care), and the patient transition approach (consultative or shared-care). Data have shown many of these models to be effective for certain populations, but evidence on universal impact is limited.⁹ Both primary care physician (PCP)–led and more collaborative shared care models remain important, because reliance on specialist care models is not feasible for many communities. As for specialized care models, academic practices have faced challenges in recent years providing care to cancer survivors alongside patients with new and active cancer. These data demonstrate that many have adapted by empowering APP-led survivorship care clinics. Most of the centers surveyed use both physicians and APPs to staff survivorship clinics, with more than one-third relying entirely on APPs.

Findings from this survey also indicate a move toward standardizing which patients are seen and when, presenting opportunities to critically evaluate these variables in the future. Although variation exists in the initiation and duration of survivorship care, most centers have implemented referral algorithms or systems to help guide this process. Open-ended feedback pointing to recurrence risk as a factor for referrals appears to demonstrate that survivorship clinics have a strong surveillance component. Variation in duration of follow-up was reported, but it is notable that >50% of institutions reported a model in which they follow survivors for their lifetime. These variations may be explained by differences across disease sites, which we were unable to capture with this survey, but trends are beginning to emerge.

These data highlight some interesting trends in survivorship care; however, additional research is needed. This work was limited to reporting on survivorship care practices within large academic cancer centers, and as such did not capture how care is delivered within smaller and/or community practices. This survey also collected limited data regarding disease-specific variations in survivorship care delivery. Some of the reported variability may reflect the process of customizing survivorship care according to disease-specific needs and risks.

Overall, additional work is needed to continue refining and evaluating how survivorship care models are integrated into cancer centers to best serve patients with cancer and cancer survivors. Additional research is needed to evaluate critical elements and subsequent outcomes of survivorship care clinics, including overall health, quality of life, and cancer-related outcomes. Evaluation of economic outcomes, such as hospitalization rates and early interventions, is also necessary, particularly as reimbursement efforts continue to evolve. Some reviews have found that APP- or PCP-led survivorship care provided financial benefits without compromising quality,⁹ which is worth further exploration. Future considerations for the NCCN BPC include surveys or other activities to delve deeper into program development, structure, and resources necessary to provide comprehensive evidence-based survivorship care. These efforts, combined with policy solutions to codify reimbursement, such as the proposed Comprehensive Cancer Survivorship Act,¹⁰ offer many opportunities to advance survivorship care in the near term.

Conclusions

The overall success and sustainability of survivorship care require combining long-term surveillance, survivorship clinical care, and supportive programming. These efforts require multistakeholder collaboration from primary care, oncology practitioners, administrators, policymakers, and payers to align patient needs with necessary resources. In addition to the “Standards for Survivorship Care” within the NCCN Guidelines for Survivorship,² the Commission on Cancer outlines a method for creating an inclusive, multidisciplinary approach to providing survivorship care.¹¹ Although these standards are somewhat aspirational in nature, programs should strive to consistently include these concepts, combining robust supportive programming, clinical support, and ongoing research efforts, while working collaboratively toward shared definitions and standards regarding survivorship care.