Cancer Survivorship Care in the United States at Facilities Accredited by the Commission on Cancer

Key Points Question What are the prevalence and types of survivorship services currently available to survivors of adult-onset cancer in the United States? Findings In this survey study of 384 facilities accredited by the American College of Surgeons Commission on Cancer, sexual health and fertility services were provided less commonly than other services, and survivorship services were usually delivered by cancer treatment teams rather than specialized survivorship clinics. More than 80% of institutions perceived their survivorship services as beneficial but estimated a minority of survivors received them; a lack of referrals and low patient awareness were endorsed as primary barriers. Meaning These findings establish a national benchmark for survivorship care delivery, identify gaps in specific services and opportunities for intervention, and contribute to longitudinal reevaluation for tracking progress.


Introduction
3][4] Most of these individuals are survivors of adult-onset cancer, and most will remain in remission and experience years of additional life. 58][9][10][11][12] Comprehensive survivorship care can facilitate the early recognition, optimal management, and secondary prevention of many late effects, as well as delivery of health information and psychosocial support. 13For these reasons, the National Comprehensive Cancer Network and American Society of Clinical Oncology recommend routine provision of survivorship care after treatment of adult-onset cancer. 14,15e American College of Surgeons (ACS) Commission on Cancer (CoC) accredits institutions that meet CoC standards addressing key components of quality cancer care. 16,17Currently, there are more than 1400 CoC-accredited cancer programs in the US, which include both academic and community-based practices and treat more than 70% of all newly diagnosed patients. 18Since 2015, CoC standards have incorporated survivorship care as an accreditation criterion.Initially, CoC Survivorship Standard 3.3 set targets for delivery of survivorship care plans to patients. 19,20In 2021, this was replaced by the current CoC Survivorship Standard 4.8, which requires institutions to offer a survivorship program for patients treated with curative intent. 16,21Expectations for Survivorship Standard 4.8 include appointing a survivorship program coordinator, developing a multidisciplinary survivorship program team, and determining a list of services, offered on site or by referral, that address the needs of survivors of cancer.Documentation of at least 3 services and their impact is required annually, with enhancement of these and additional services expected over time. 16,21spite survivorship being recognized as part of the cancer care continuum, limited research has examined the availability and types of services for survivors of adult-onset cancer.[24][25] Given the ACS CoC's national presence and inclusion of survivorship care as an accreditation standard, this consortium of institutions offers a unique opportunity for examining survivorship services for patients with adult-onset cancer.The purpose of this study was to characterize the prevalence and types of survivorship services for patients with adult-onset cancer among CoC-accredited programs.Understanding the landscape of these services in the US will provide a national benchmark and contribute to identifying gaps, strengths, and interventional opportunities for improving survivorship care for this large and growing population.

Methods
This survey study was deemed exempt from review by the Advarra Institutional Review Board because the study posed no more than minimal risk and responses were anonymous.All survey respondents provided informed consent.This study followed relevant best practices of the American  27,28 hosted by the ACS.

Recruitment and Survey Procedures
Eligible institutions were invited to participate via an email sent to their ACS cancer program administrator (CPA) of record.Email invitations described the study purpose, significance, and survey length (15-20 minutes).CPAs received an information sheet and instruction to engage other institutional personnel as appropriate, including the cancer committee chair, cancer liaison physician, survivorship program coordinator, and certified tumor registrar (eAppendix 1 in Supplement 1).A reminder email was sent 1 week following the initial invitation via REDCap.Only 1 survey per institution was accepted.All responses were anonymous and deidentified.

Survey Development and Content
Survey items were developed iteratively by the study team.To calibrate the survey draft, 12 representative ACS CoC programs were invited to provide deidentified feedback, which led to minor adjustments.
The survey solicited information on facility characteristics and care components recommended in CoC Survivorship Standard 4.8. 16Accordingly, a survivorship program was defined as meeting the needs of patients with adult-onset cancer treated with curative intent; a survivor of cancer was defined as someone who has completed the acute phase of conventional therapy (ie, cytotoxic chemotherapy, radiation therapy, cancer-directed surgery) but might still be receiving an extended course or chronic phase of noncytotoxic maintenance therapy (eg, aromatase inhibitors or immunomodulators).Items used a forced-choice format; where applicable, respondents endorsed 1 or more response options and could provide free-response information (eAppendix 2 in Supplement 1).

Statistical Analysis
Programs that completed more than 50% of the survey were included in the analytic sample.
Analyses included frequencies and contingency tables to characterize responses in aggregate and across CoC program categories.Analysis was performed using Stata software version 15 (StataCorp).
Data were analyzed from July 2023 to October 2023.

Study Sample
Derivation of the analytic sample is summarized in the eFigure in Supplement 1.The survey was sent to 1400 eligible programs, of which 1353 were reached.Overall, 1022 CPAs were responsible for 1 institution each, while 116 CPAs were responsible for more than 1 institution each and received a corresponding number of unique links (range, 2-10 per CPA).Ultimately, 439 responses were received (380 fully completed, 59 partially completed).After data cleaning, 55 partially completed responses were dropped and 4 were retained.The final analytic sample comprised 384 programs (response rate, 27.4%) from across all 8 eligible categories in similar proportions to CoC programs overall (Table 1).

Nurse
Bars indicate the percentage of respondents in aggregate that endorsed each role as a member of their survivorship program team.Respondents selected all that applied.The total number of responses was 384.Other members reported by 148 programs were acupuncturist, administrator, art and music therapist, massage therapist, cancer center manager, cancer program coordinator, cancer program associate, cancer registrar, case manager, certified community health worker, chaplain, clinical trial nurse, community partner, director of rehabilitation, education coordinator, exercise physiologist, financial counselor or navigator, integrative health specialist, life coach, lymphedema therapist, medical assistant, mindfulness counselor, oncology counselor, palliative care, patient navigator, pharmacist, psychology or behavioral health counselor, radiation therapist, researcher, respiratory therapist, sexual health counselor, speech-language pathologist, speech therapist, spiritual care, tobacco cessation coordinator, tumor registry, wellness specialist, and yoga instructor.Team members by program category are provided in eTable 1 in Supplement 1.

Survivorship Program Components
Delivery of survivorship care by the same cancer treatment team was the most endorsed component (243 programs [63.3%]), followed by having regular team meetings (228 programs [59.4%]) (Figure 3A  Bars indicate the percentage of respondents in aggregate that endorsed each service as currently available in their survivorship program.Respondents selected all that applied.The total number of responses for each service ranged from 374 to 382.Other services reported by 36 institutions were acupuncture, advanced care planning, art therapy, bone health clinic, cancer cognitive clinic through neurology, cancer mindfulness, cancer rehabilitation services, chaplain or pastoral care and spiritual support, child life specialist, clinical trials, community resources, cooking classes, expressive arts through medicine, hearing and audiology, integrative health classes, integrative medicine, lifelong movement program, lifestyle medicine, massage, mental wellness program, mindfulness meditation class, music therapy, nurse navigation, oncology dietitian, online nutrition class, palliative services, pelvic floor therapy, recorded lectures, physical medicine and rehabilitation, precision genomics program, reiki therapy, return to work program, 7-week cancer survivorship program, smoking cessation, spirituality classes, wellness classes, and yoga therapy. programs [36.5%]).Needing dedicated institutional funding was endorsed twice as often as philanthropic support (121 programs [31.5%] vs 56 programs [14.6%]).

Discussion
This survey study characterized the prevalence and types of survivorship services available to survivors of adult-onset cancer across ACS CoC-accredited programs, a large consortium of facilities that spans the US, provides cancer care to three-quarters of all US patients with cancer, and includes both academic and community-based settings.Our findings indicate widespread availability of some survivorship services but also identify clear gaps, suggesting modifiable areas for intervention to improve their availability and uptake.This national benchmark for adult survivorship care enables assessing the impact of new approaches and tracking progress longitudinally.Although it is now recognized as an essential phase of cancer care, survivorship care remains largely underdeveloped, prompting its identification as a national priority and magnifying the importance of these findings. 29-31Several services were available to all survivors at nearly 90% of programs, notably screening for new or recurrent cancers and specialty referrals for managing late effects.Less available were cancer genetics counseling and, especially, fertility and sexual health services.Given the frequency of some pathogenic germline variants 32,33 and the patient-reported importance of fertility and sexual health, [34][35][36][37] these services require wider availability.Similarly, a small proportion of programs endorsed offering patient support groups, fitness programs, and educational series.A rich variety of allied survivorship services were reported by a minority of respondents; however, as many such services are not reimbursed by insurance, it remains challenging for institutions to offer them.
Overall, these findings are similar to those of a 2024 study that assessed survivorship service availability as described on the CoC-accredited survivorship program websites. 38In that study by Anampa-Guzmán et al, 38 cancer genetic counseling, fertility, and sexual health services also appeared to be underrepresented.
Treatment summaries and survivorship care plans provide relevant cancer-related health information to survivors and their health care practitioners. 39,402][43][44] Thus, it was somewhat surprising that more than 90% of programs reported providing one or the other to all survivors (more frequent for treatment summaries) or certain subsets (more frequent for survivorship care plans).This could indicate that programs derive value from these documents or could represent the lasting impact of Survivorship Standard 3.3, in which distribution of survivorship care plans was the sole adherence metric until implementation of Survivorship Standard 4.8, which reflects a broader, programmatic emphasis. 19o-thirds of programs reported that the cancer treatment team also provided survivorship care, whereas only one-third of programs offered separate, specialized survivorship clinics.This is quite different than pediatric oncology, where specialized late-effects clinics are widely implemented and considered the standard of care. 22Here, specialized survivorship clinics were more common among comprehensive cancer centers than community-based programs.The American Society of Clinical Oncology Survivorship Compendium recognizes disease-and treatment-specific survivorship care as a viable survivorship care model. 45,46Given the much higher prevalence of adult-onset cancer, this model might be more feasible and clinically appropriate than the specialized, resourceintensive approach common in pediatrics.Additional research is needed to determine optimal models of care following adult-onset cancer, accounting for cancer type, age, and risk profile.
Several programmatic themes emerged.Importantly, programs reported a lack of institutional Many of the specific and thematic findings of our study validate the qualitative experiences of 8 selected survivorship programs in the US reported by Manne and Nekhlyudov. 47Across those programs, there was a similarly wide range of services offered and heterogeneity of clinical models.
Although some programs used the electronic health record to improve communication among care staff, enhanced modules for facilitating treatment summaries appeared less available.Needed resources were similar, including sustainable funding sources, informatics for capturing outcomes data, and institutional engagement for developing credible business plans. 47In addition to providing quantitative data, important additional strengths of our study are leveraging the unique resource of CoC-accredited programs, which reflects cancer care across the US with an analytic sample of nearly 400 programs that captures the diversity of CoC-accredited institutions and practice settings.

Limitations
This study has some limitations.There is potential for participation bias related to the response rate.9][50] Furthermore, the need for higher participation rates to support face validity has been questioned when representativeness can be documented otherwise, as was the case in this study, in which the proportions of program categories among survey respondents were similar to those among CoC-accredited programs overall. 51This study did not evaluate access to services or their concordance with guidelines.Likewise, collection of survivorship program operational details was beyond the study scope and warrants future research.

Conclusions
This survey study of CoC-accredited programs describes the current landscape of survivorship services available to patients with adult-onset cancer.Several conclusions can be drawn from the results.First, although survivorship care after adult-onset cancer is currently heterogenous, most participating programs offered many services aligned with the unmet needs of survivors.This provides an encouraging starting point for national efforts to advance survivorship care.Second, despite the multidisciplinary composition of survivorship program teams, opportunities for greater engagement of relevant professions (eg, nutrition, physical and occupational therapy, behavioral health) existed.Third, while some programs offered specialized survivorship clinics, more offered treatment team-based clinics, which may represent a more feasible and medically appropriate approach for survivors of adult-onset cancer.
Fourth, for survivorship program advancement, institutions must invest resources to increase their capacity, visibility, and uptake.Fifth, survivorship care standards tied to performance metrics contrib-

Figure 2
Figure 2. Survivorship Services Currently Available

Figure 3 .
Figure 3. Existing Program Components and Additional Desired Resources support through dedicated salaries, marketing, philanthropy, informatics, cost centers, and office or research staff.Correspondingly, the most important additional resources needed for program advancement included dedicated APCs, enhanced information technology, and internal program visibility.Lower priority was given to having survivorship physicians, external marketing, research, and philanthropy.Consistent with these themes were the perceptions of survivorship program value and challenges.Despite nearly 90% of respondents endorsing benefit for survivors who receive their services, they indicated only a minority of patients receive them, with principal barriers being poor utilization by referring oncologists and low patient awareness.Collectively, these observations reveal a pressing need for institutions to prioritize survivorship care through investing in clinical and office staff, survivorship enhancements for electronic health record systems, patient-facing survivorship materials, and clear expectations for referral of patients to survivorship services.Research tracking the impacts of such initiatives is needed.

Furthermore, survey content
mapped closely to CoC Survivorship Standard 4.8, currently the only US accreditation standard for adult-onset cancer survivorship.16

Study Design, Setting, and Participating Institutions An
Association for Public Opinion Research (AAPOR) reporting guideline.26online,cross-sectional survey of ACS CoC-accredited programs (eAppendix 1 in Supplement 1) was administered from May 4 to May 25, 2023, a survey window congruent with ACS practice.The cohort comprised facilities belonging to 1 of 8 predefined membership categories: Academic Comprehensive Cancer Programs, Comprehensive Community Cancer Programs, Community Cancer Programs, Free-Standing Cancer Center Programs, Hospital Associate Cancer Programs, Integrated Network Cancer Programs, National Cancer Institute (NCI)-Designated Comprehensive Cancer Programs, and NCI-Designated Networks (eAppendix 1 in Supplement 1).Excluded categories were pediatric cancer programs (due to study focus on adult-onset cancer) and Department of Veterans Affairs cancer programs (due to data usage protections).No incentives were provided.The survey was available in English only.Data were collected and managed using REDCap software (REDCap Consortium)

Table 1 .
Free responses highlighted a wide variety of other roles.Survivorship team composition was relatively consistent across CoC program categories (eTable 1 in Supplement 1), although Integrated Cancer Network, Academic Comprehensive Cancer, and NCI-Designated Cancer programs reported greater representation of physicians and APCs.Institutional Characteristics summarizes available survivorship program services.Most programs reported offering multiple services.Of the 15 services queried, 11 were individually endorsed by more than 90% of programs as available either to all survivors or certain subsets; 8 services were endorsed by more than 80% of programs as available for all survivors.Among care delivery services (Figure2A), formal specialist referrals for managing late effects were available to all or some survivors at 361 institutions Figure 1 summarizes team members.Most programs identified nurses (334 programs [87.0%]), followed by social workers (278 programs [72.4%]), program coordinators (275 programs [71.6%]),APCs (252 programs [65.6%]), nutritionists (250 programs [65.1%]), and physicians (243 programs [63.3%]).Less than half of the included programs reported physical (180 programs [46.9%]) or occupational (87 programs [22.7%]) therapists (Figure 1). a Percentages are given for columns.b The denominator for this column is 384.Total values may not sum to 384 due to item missingness.c d Includes Illinois, Indiana, Michigan, Ohio, and Wisconsin.e Includes the District of Columbia, Delaware, Florida, Georgia, Maryland, North Carolina, South Carolina, Virginia, and West Virginia.f Includes New Jersey, New York, and Pennsylvania.g Includes Alaska, California, Hawaii, Oregon, and Washington.h Includes Arkansas, Louisiana, Oklahoma, and Texas.i Includes Alabama, Kentucky, Mississippi, and Tennessee.j Includes Connecticut, Massachusetts, Maine, New Hampshire, Rhode Island, and Vermont.k m Participants could select more than 1 response.Percentages are given for rows.n Includes accreditation manager, accreditation coordinator, cancer data coordinator, cancer quality coordinator, clinical supervisor, director of cancer care services, director of quality and safety, director of patient and family services, medical director, nurse practitioner, nurse manager, nurse navigator, physician center manager, project coordinator, quality improvement coordinator, social work manager, survivorship cocoordinator, and survivorship physician assistant.patient support groups were endorsed by more than 90% of programs as available to all or some survivors, but patient support groups were more often limited to specific survivor populations (64 programs [16.8%]) than were other psychosocial services.Physical activity and fitness programs and patient seminars were most frequently endorsed as not available (physical activity and fitness: 53 programs [14.1%]; patient seminars: 70 programs [18.5%]).Free responses indicated a wide variety of other survivorship services offered.Specialized Survivorship Clinics, Program Components, and Resources Needed Specialized Survivorship Clinics As summarized in eTable 2 in Supplement 1, 120 programs (31.3%) endorsed offering a specialized survivorship clinic.Of these, 58 programs (48.3%) offered clinics for all survivors and 57 programs (47.5%) for certain subsets (with some offering both).Comprehensive Community Cancer Programs reported the highest percentage of clinics serving all survivors (17 programs [60.7%]), while Hospital Associate Cancer Programs (6 programs [60.0%]) and NCI-Designated Cancer Centers (8 programs [57.1%]) more frequently reported clinics serving subsets of patients.
; eTable 2 in Supplement 1).Approximately one-third of programs had clinical team members with dedicated survivorship effort.Approximately one-fifth of programs had physicians with survivorship expertise, dedicated survivorship program funding, a survivorship database,

Table 2
and eTable 3 in Supplement 1 summarize program perceptions about the development, delivery, and impact of their survivorship care.Overall, 224 respondents (59.3%) reported having a survivorship program prior to the introduction of Survivorship Standard 4.8 in 2021.This was true most often among Free Standing Cancer Center programs (3 programs [100%]) and NCI-Designated Comprehensive Cancer programs (14 programs [73.7%]) and least often among Community Cancer (41programs [50.0%]).In aggregate, most respondents definitely agreed (162 programs [43.1%]) or somewhat agreed (173 programs [46.0%]) that Survivorship Standard 4.8 facilitated initiation or advancement of their survivorship program.In estimating what proportion of eligible survivors receive available services, more than 80% of respondents endorsed some (229 respondents [60.7%]), few (77 respondents [20.4%]), or none (1 respondent [0.3%]).Institutions perceived the single most common barrier to receiving their survivorship services to be lack of Bars indicate the percentage of respondents in aggregate that endorsed each component as currently available (A) and each additional resource needed for advancing their survivorship program (B).For existing components, respondents selected all that applied; for resources needed, respondents selected the 5 most important.The total number of responses was 384.programs

Table 2 .
Institutional Perceptions About the Development, Delivery, and Impact of Survivorship Care uted to program development.With 90% of institutions endorsing CoC Survivorship Standard 4.8 as instrumental for initiating or developing their own programs, there is strong evidence to build on this and similar standards in the future.Initiatives that leverage successful programs to guide others in navigating the formidable challenges of program development may expedite the uniform delivery of highquality and comprehensive survivorship care.Survivorship Program Team Members by CoC Program Category eTable 2. Specialized Survivorship Clinics, Program Components, and Needed Resources by CoC Program Category eTable 3. Institutional Perceptions About the Development, Delivery, and Impact of Survivorship Care by CoC