Survivorship after adolescent and young adult cancer: models of care, disparities, and opportunities

Abstract

Survivors of adolescent and young adult (AYA; age 15-39 years at diagnosis) cancer are a growing population with the potential to live for many decades after treatment completion. Survivors of AYA cancer are at risk for adverse long-term outcomes including chronic conditions, secondary cancers, impaired fertility, poor psychosocial health and health behaviors, and financial toxicity. Furthermore, survivors of AYA cancer from racially minoritized and low socioeconomic status populations experience disparities in these outcomes, including lower long-term survival. Despite these known risks, most survivors of AYA cancer do not receive routine survivorship follow-up care, and research on delivering high-quality, evidence-based survivorship care to these patients is lacking. The need for survivorship care was initially advanced in 2006 by the Institute of Medicine. In 2019, the Quality of Cancer Survivorship Care Framework (QCSCF) was developed to provide an evidence-based framework to define key components of optimal survivorship care. In this commentary focused on survivors of AYA cancer, we apply the QCSCF framework to describe models of care that can be adapted for their unique needs, multilevel factors limiting equitable access to care, and opportunities to address these factors to improve short- and long-term outcomes in this vulnerable population.

Survivors of cancer treated as adolescents and young adults (AYA; age 15-39 years at diagnosis) are a growing yet understudied population. Cancer incidence in AYAs is increasing by approximately 1% annually in the United States, which translates to about 90 000 new diagnoses annually (1,2). At the same time, 5-year survival has increased to greater than 85% in aggregate, leading to a population of more than 2 million survivors of AYA cancer with the potential to live many decades after treatment (1-3). AYA patients often fall between the clinical spheres of childhood and adult cancer treatment and are less likely than either group to receive optimal medical and psychosocial cancer services or to be treated in a comprehensive cancer center (4). A growing number of initiatives are focused on increasing AYA access to high-quality cancer care, particularly through the development of AYA-specific programs and increasing clinical trial participation (5,6). Less attention has been dedicated to ensuring that AYAs have equitable access to high-quality survivorship care. Without patient and provider education and care coordination, the needs of many survivors of AYA cancer are unaddressed or inadequately met. This might be especially true for those treated in community settings where post-treatment care may be more fragmented (7). This loss of follow-up care is highlighted in a study of survivors of AYA cancer treated at pediatric centers, adult cancer centers, and community hospitals, which found that a decade after initial diagnosis, approximately 70% of patients were not receiving any survivorship follow-up care (8).

In 2006, nearly 2 decades ago, the landmark Institute of Medicine (now National Academy of Medicine) report From Cancer Patient to Cancer Survivor: Lost in Transition articulated the need for high-quality, comprehensive survivorship care (9). In 2019, the Quality of Cancer Survivorship Care Framework (QCSCF) was developed to provide evidence-based definitions of key components of survivorship care and to guide the development of quality metrics (10). To inform age-appropriate survivorship care that meets the unique needs of survivors of AYA cancer, we use the QCSCF to illuminate unique aspects of AYA survivorship. Specifically, we describe models of survivorship care for survivors of AYA cancer, documented disparities within this population, and how these models can address multilevel barriers associated with disparities and improve equitable provision of high-quality survivorship care to this large and growing population.

Quality of cancer survivorship care framework and survivors of AYA cancer

The QCSCF was developed through a review of guidelines, published literature, grants, and key expert interviews (10). The QCSCF presents an overview of care recommendations, tailored to individual patients based on cancer type, treatment, and other individual and contextual factors. We do not duplicate those recommendations here, but, instead, we highlight disparities and barriers to care that warrant emphasis among survivors of AYA cancer. Throughout this commentary, we focus specifically on survivors of AYA cancer, rather than AYA-aged survivors of childhood cancer.

Based on the QCSCF, there are 5 domains relevant to the care of cancer survivors: 1) prevention and surveillance for recurrence and new cancers, 2) surveillance and management of chronic medical conditions, 3) surveillance and management of physical effects, 4) surveillance and management of psychosocial effects, and 5) health promotion and disease prevention. A summary of current knowledge regarding domain-specific risks among survivors of AYA cancer is provided in Table 1 and summarized below. Currently, AYA-specific survivorship guidelines do not exist, and late-effects surveillance schedules are often drawn from treatment protocols or disease-specific guidelines developed for other cancer populations. Figure 1 illustrates the impact of cancer diagnosis and treatment during the AYA years on long-term health outcomes and modifying clinical and sociodemographic factors.

Table 1.

Domains of care^a for survivors of AYA cancer

Survivorship care domain	What is known about survivors of AYA cancer	Gaps in knowledge and care delivery
Surveillance for recurrences and new cancers	Estimates of 20- to 25-year cumulative incidence of SMNs range from 8.9% to 12.5% (11-13) 25% higher incidence of SMNs than the general population and 84% higher mortality from these cancers (14) Older age, female sex, White race, advanced stage at primary cancer diagnosis, and treatment with radiation therapy are all associated with increased risk of SMNs (11) Breast cancer, melanoma, colorectal cancer, lung cancer, lymphomas, and ovarian cancer are the most common SMNs (11, 13,14) Recurrence of common AYA cancers is more likely to occur early in survivorship (ie, within the first 10 years) (15-17)	Limited screening for variants in cancer predisposition genes and genetic counseling uptake in AYAs at high risk for cancer predisposition syndromes (18) Lack of knowledge of all variants that may be associated with cancer predisposition in the general population
Surveillance and management of chronic medical conditions	47% higher risk of having 1 chronic condition and 63% higher risk of multiple chronic conditions compared to the general population (19) Most common comorbidities: dyslipidemia, hypertension, diabetes, thyroid disorders (19) Highest excess risk: avascular necrosis, osteoporosis, joint replacement, stroke, premature ovarian failure, cardiomyopathy or heart failure (19) Treatment-related factors are associated with risk (eg, cardiomyopathy and heart failure: anthracylines, alkylating agents, trastuzumab, chest radiation; premature ovarian failure: alkylating agents, platinum agents; avascular necrosis: methotrexate, corticosteroids) (19) Disparities in risk of chronic conditions by race, ethnicity, and socioeconomic status (20-23) High burden of polypharmacy associated with multiple chronic conditions (24)	Long-term follow-up guidelines for treatment-associated chronic conditions such as the Children’s Oncology Group Long-Term Follow-Up Guidelines that are specific to survivors of young adult cancer have not been developed Limited access to and utilization of survivorship care Late effects associated with immunotherapy and novel agents are unknown
Surveillance and management of physical effects	Most common physical concerns: fatigue, sleep disturbance, memory and concentration problems (25,26) Survivors with a history of cancer-directed surgery are at increased risk for physical impairment of work tasks (27)	Survivors report unmet supportive care needs Routine longitudinal collection of patient-reported outcomes is needed to better understand long-term physical health trajectories
Surveillance and management of psychosocial effects	Survivors report that cancer had a negative impact on financial status, body image, employment, spousal relationship, and plan for having children (28,29) High rates of perceived infertility among survivors; perceived risks are discordant with objective risk (30,31) 30% increased risk of an infertility diagnosis in female survivors compared to the general population; risk varies by cancer type (32) Survivors have lower quality of life and higher prevalence of anxiety and depression compared with the general population (33,34) High risk of financial toxicity (35,36) High burden of sexual dysfunction and body image dissatisfaction (37) Racial, ethnic, and socioeconomic disparities in risk of psychological distress and poor mental health outcomes (38-40)	Survivors report unmet supportive care needs AYA age group encompasses a wide range of life stages (late adolescence, emerging adulthood, young adulthood) that are each associated with different developmental milestones (ie, education, employment, new social roles) with the potential to be disrupted by a cancer diagnosis Limited fertility preservation counseling, access, and utilization Survivors report unmet survivorship needs in reproductive health and navigating financial outcomes
Health promotion and disease prevention	Survivors report lower physical activity levels and higher rates of smoking, marijuana use, illicit drug use, and nonmedical opioid use than the general population (41-45)	Given increased risk of chronic health conditions, preventive care with a focus on physical activity, nutrition, and smoking and drug use cessation is needed

^aAdapted from Nekhlyudov et al. (10). Quality of Cancer Survivorship Framework. SMN = secondary malignant neoplasm.

Figure 1.

Clinical and sociodemographic factors affecting risk of late effects and attainment of life milestones in survivors of adolescent and young adult cancer. *Cancer treatment may include chemotherapy, immunotherapy, surgery and/or radiation therapy.

Prevention and surveillance for recurrence and new cancers

Survivors of AYA cancer have a 25% higher incidence of subsequent de novo cancers and an 84% higher mortality from these cancers compared to the general population (14). This is likely due to a combination of exposure to DNA-damaging cancer treatments as well as some AYAs carrying pathogenic germline variants in cancer predisposition genes; however, this is an understudied area (46). Even among breast and colon cancer survivors, AYA populations with well-recognized genetic predisposition syndromes, genetic testing is often underutilized (18, 47,48). Identifying likely pathogenic germline variants associated with cancer predisposition in survivors can guide appropriate surveillance for risk of secondary cancers, inform family member testing, and help educate survivors about risk in potential future offspring.

Surveillance and management of chronic medical conditions

Survivors of AYA cancer have about a 50% increased risk of having any chronic condition compared to peers without a cancer history (19). The most common comorbidities among survivors of AYA cancer include dyslipidemia, hypertension, diabetes, and thyroid disorders (19). Therapeutic exposures, sociodemographic factors, and health behaviors impact the risk of chronic conditions in survivors of AYA cancer (19,20, 49). As more AYAs are being treated with novel therapies (50,51), longitudinal studies are needed to better understand the late effects of these agents among survivors.

Surveillance and management of physical effects

In terms of physical effects, survivors of AYA cancer commonly report fatigue, sleep disturbance, and memory and concentration problems (25,26). However, survivors report that supportive care needs are the most likely to go unmet (52). Routine, longitudinal collection of patient-reported outcomes (PROs) is needed to better understand trajectories of physical effects and opportunities for intervention.

Surveillance and management of psychosocial effects

Psychosocial late effects include negative impacts on finances, body image, employment, and intimate relationships (28,29). Survivors of AYA cancer also report decreased health-related quality of life (HRQoL) overall and have a higher prevalence of anxiety and depression, specifically, compared to the general population (33,34). Additionally, survivors have an increased risk of infertility (53). However, individual perceived risks of infertility are discordant with objective risk, with both under- and overestimation observed among survivors and their providers (30,31,54). Ongoing fertility counseling and access to specialty care are needed, as childbearing is a major concern for survivors. Similar to physical effects, longitudinal collection of PROs can improve the understanding of psychosocial late-effect trajectories among survivors of AYA cancer, particularly as they move through life stages (late adolescence, emerging adulthood, young adulthood, middle age, and beyond) that each carry different psychosocial challenges.

Health promotion and disease prevention

There are differences in health behaviors among survivors of AYA cancer compared to the general population, with survivors reporting lower levels of physical activity and higher rates of smoking, marijuana use, illicit drug use, and nonmedical opioid use (41-45). In addition to targeted screening for secondary cancers, chronic conditions, and physical and psychosocial symptoms, preventive care with a focus on physical activity, nutrition, and substance use is needed.

Contextual domains of health-care delivery: Models of survivorship care

In the QCSCF, contextual domains of health-care delivery influence care quality. Central to these are clinical structures, typically referred to as models of care (55). Model dimensions (eg, centralized vs decentralized) may influence other contextual domains of care delivery described in the QCSCF, including communication and care coordination and the patient and caregiver experience. There are broad challenges to implementing survivorship care, including for survivors of AYA cancer, and ideal models of care for survivors of AYA cancer must take into account both the evidence-based needs of survivors and what is feasible within particular health-care and community settings. Figure 2 illustrates basic models of care that can be adapted for AYA survivorship care, depending on setting, and highlights the strengths and weaknesses of each. In this section, we provide recommendations for model implementation to serve survivors of AYA cancer.

Figure 2.

Models of survivorship care for survivors of AYA cancer. APP = advanced practice provider; AYA = adolescent and young adult.

Academic cancer center models

Survivorship care models in the academic cancer center setting may take either the consultative or longitudinal form. The consultative model of survivorship care is a basic model wherein survivors are referred from their primary oncologist to a survivorship provider for a one-time visit (56). After this consultation, care generally remains with the primary oncology team or transitions back to a primary care provider (PCP). For survivors of AYA cancer, who often experience post-treatment insurance changes, travel or relocation, and other barriers to consistent care (57-59), a consultative model can ensure that survivorship concerns are discussed and a late-effects surveillance plan is made. This model of care is streamlined, requires relatively few clinical resources, and offers expert survivorship input while mitigating the logistical and resource burdens of providing continuous survivorship care at an academic center. It may be best suited for patients at lower risk of developing late effects.

In the longitudinal model, patients are formally transitioned from their primary oncology team to the survivorship team for ongoing care, typically 1 to 5 years after treatment completion (60). This model can improve survivors’ knowledge of their cancer history and the risks of late effects and overall adherence to recommended late-effects screening (61,62). These models often offer multidisciplinary programs for survivors of all types of cancer (56) and thus require extensive infrastructure to provide access to multiple specialty areas across the institution. As such, it may be most relevant for survivors at high risk of developing late effects. However, several challenges posed by this age group may interfere with implementation of this model: many survivors of AYA cancer move through phases of losing health insurance (63), AYAs are geographically mobile and may face geographic barriers to access (64,65), and not all will require the resource-intensive care in which longitudinal models excel. Thus, a risk-stratified approach to implementing this model may be most appropriate.

Processes for referring and transitioning AYAs from community settings, where the majority of AYAs with cancer are treated (66-68), may be lacking, and equitable access to the limited number of these longitudinal programs remains a barrier.

Community-based models

In the community-based model, community oncology practices offer survivorship care or refer survivors to providers in the community for specific survivorship-related needs, often with a focus on supportive care and allied health systems services (69), which is especially relevant for survivors of AYA cancer. This model offers continuity and comprehensive care that may be more accessible to cancer survivors but can be difficult to develop and sustain due to resource constraints. To address this, the National Cancer Institute has increased funding for community survivorship programs through the Community Cancer Center Program (70). Importantly, the majority of AYAs receive cancer treatment in community centers (71). Thus, continued investment in developing community-based survivorship models is needed.

Community PCP survivorship care models are defined by the transition of a survivor’s care from the oncologist back to the PCP. As survivors of AYA cancer voice the importance of comfort with their preferred provider in follow-up care (72), for those with a consistent PCP, this model offers care continuity and access to additional expertise, if needed. PCP-led models have demonstrated lower costs to the health system and patients, higher care coordination, more health promotion, and higher patient and caregiver satisfaction compared with specialty-led models (73). However, for those who lack a consistent PCP due to transition from a pediatric to an adult provider, moving, or discontinuity of employment and insurance plans, PCP-based models may be challenging. Additionally, many PCPs report lacking knowledge and comfort with assessing and managing late effects, may experience communication challenges with primary oncologists, and may have time restrictions that limit the ability to provide comprehensive survivorship care (74,75). Particularly given capacity challenges in oncology practice, there is a need to build capacity for and confidence in survivorship care delivery in primary care, where providers are trained in preventing and managing chronic conditions. These efforts may be especially important in community health centers that treat publicly insured and uninsured or underinsured survivors of AYA cancer burdened by multiple disparities in social determinants of health (SDoH) (76).

Individual and socioecological factors: Disparities and multilevel barriers and opportunities

The QCSCF emphasizes the centrality of individual patient factors in driving care delivery. Critically, survivors of AYA cancer experience sociodemographic disparities in long-term survival and in risk of chronic conditions and secondary malignancies. For example, non-Hispanic Black (hereafter “Black”) and Hispanic survivors of AYA cancer have lower long-term survival than non-Hispanic White (hereafter “White”) survivors of AYA cancer at up to 20 years of follow-up (15,16, 77-80). Lower socioeconomic status (SES), compared with higher SES, and having public or no insurance are also associated with decreased long-term survival in survivors of AYA cancer (16, 80-84). Similar disparities have been documented in risk of premature mortality and chronic health conditions (17). Black race, Hispanic ethnicity, and low SES are all associated with increased risk of chronic health conditions in survivors of AYA cancer compared with White race and high SES, respectively (19, 21, 85). These disparities are likely due in part to structural inequities and adverse SDoH that disproportionately affect racial and ethnic minoritized populations (86,87). Survivorship care, as in other inequities in care delivery, offers another target on which to focus efforts to reduce health outcome disparities.

In the QCSCF, socioecological factors also influence care delivery; similarly, intersectional SDoH operate at multiple levels to drive health disparities (88-90). Therefore, to establish equitable survivorship care for survivors of AYA cancer, attention to these multiple, interacting, and at times overlapping levels of influence is needed. In this section, we highlight key multilevel barriers to care for survivors of AYA cancer and opportunities to address them. Specifically, barriers to survivorship care occur at the policy, community, organizational, interpersonal, and individual levels, and potential solutions are complex and multilevel (Figure 3).

Figure 3.

Cancer survivorship care quality framework and barriers to care for survivors of AYA cancer.

Policy

Policy-level barriers to AYA survivorship care include reimbursement and insurance coverage structure and fragmentation of care across health networks (88). A recent survey of cancer providers across the United States found that insurance coverage denials were common for survivorship-focused services, including screening for new primary cancers and late effects of treatment, symptom management, and supportive care (91). Despite improvements in access to insurance coverage for AYAs after the Affordable Care Act (ACA), many AYAs remain uninsured or underinsured, particularly in states where Medicaid coverage was not expanded (92-94). Furthermore, financial burden resulting from out-of-pocket costs, debt, and employment and educational disruptions during treatment can exacerbate unaffordability of survivorship care, leading survivors of AYA cancer to forego recommended care (24, 35, 95-97).

Expanded access to health insurance is needed with mandates to cover survivorship care related to the late effects of cancer treatment, including psychosocial, reproductive, and supportive care. Insurance coverage disruptions are associated with decreased probability of reporting a cancer-related follow-up visit, decreased use of preventive care services, lower rates of recommended surveillance screening, and cost-related medication nonadherence among cancer survivors (98-100). On the other hand, notable improvements in cancer outcomes for AYAs were observed in the years immediately after the ACA’s Dependent Care Expansion and Medicaid expansion (101,102). In addition to reducing barriers to care access, health insurance expansion may play a role in reducing health disparities, as racial and ethnically minoritized survivors of AYA cancer experienced greater survival improvements and greater increases in coverage rates after ACA enactment (101-103). Policy-level changes are needed to further broaden and maintain access to affordable health insurance (eg, through Medicaid expansion) and reduce out-of-pocket costs for survivorship care.

Policies to identify and intervene in SDoH that can influence both access to survivorship care and disparate outcomes are increasingly being implemented. For example, the Centers for Medicare and Medicaid Services have enacted policies to both document (using Z codes) and reimburse screening for SDoH among Medicare beneficiaries (104,105). These policies should be studied further to evaluate their effectiveness in reducing disparities in access and outcomes. If effective, this approach could be extended to survivors of AYA cancer and could serve as a foundation for connecting survivors to critically needed resources (eg, affordable housing, access to healthy food, medication cost assistance programs).

Finally, infrastructure and funding to support coordinated research on long-term outcomes is needed to fill gaps in the knowledge base and to inform the development of AYA-specific survivorship care guidelines. This has been implemented in the childhood cancer survivor population, with the Childhood Cancer Survivor Study providing the framework and resources to investigate survivorship outcomes and the Children’s Oncology Group’s Long-Term Follow-Up Guidelines providing general, as well as exposure-specific, recommendations for follow-up care (106,107). A similar focus is needed for survivors of AYA cancer.

Community

At the community level, there is often a lack of availability and access to survivorship care. When chronic physical and psychosocial health conditions and other survivorship needs are identified, resources to address these needs are lacking, particularly in rural areas (108). Examples include the limited availability of reproductive and sexual health services, physical and occupational therapy, rehabilitation and nutritional services, and genetic and mental health counseling (109,110). Geographic dispersion of survivors of AYA cancer may challenge efforts to develop local resources. Notably, survivors of AYA cancer living in rural areas or high-poverty neighborhoods manifest disparities in long-term survival, suggesting both the importance and lack of community-level resources (80, 111).

To address community-level barriers to survivorship care, particularly insufficient resources in high-deprivation and/or rural areas, expanded telehealth options offer a viable alternative for some services. Among cancer survivors, telehealth has been successfully used to address physical functioning, health behaviors, and psychosocial difficulties (57). During the COVID-19 pandemic, telehealth was successfully implemented for AYA cancer survivorship visits because of changes allowed under the national public health emergency (112). State licensure and reimbursement barriers should be addressed to allow clinicians to perform remote services now that this status has expired. In addition to providing care to areas that may lack other accessible services, telehealth has advantages such as reduced travel cost and time away from work or family, barriers that disproportionately impact socioeconomically disadvantaged and racially minoritized populations (113). In fact, a study evaluating primary care appointment completion rates within a large academic medical center found that the gap between Black and non-Black patients narrowed with the rise in telehealth usage (114). Similarly, a study evaluating visit completion within a community mental health clinic found that after telehealth implementation, there was no longer a significant association between income and clinic attendance (115).

Organization

At the organizational level, a standardized transition process from primary oncology treatment to long-term follow-up care is often lacking for adults, including young adults. Organizational resources are needed to support a more seamless transition to meet the complex needs of cancer survivors (116). Among survivors of AYA cancer, these transitions are often complicated by other characteristic life-stage transitions, such as changes in health-care access resulting from changes in employment and income, geographic location, or, in the case of younger AYAs, transition from pediatric to adult care providers (117,118). Although evidence to inform the transition of AYAs to survivorship care is lacking, transition facilitators for childhood cancer survivors, including AYAs treated in the pediatric setting, from pediatric survivorship care to adult-focused long-term follow-up care may be applicable. Successful practices include initiating the transition process early, keeping a focus on life beyond active therapy, providing a specific transition plan, and including well-established health-care partners throughout the system to facilitate subspecialty care and patient navigation support (119,120). However, this requires institutional commitment, and the necessary time, staff, training, and resources to provide education and to facilitate survivorship care planning are often not available (121). In other cancer populations, patient navigators have emerged as a value-added service. In this role, navigators are nonclinical professionals dedicated to supporting underserved populations, and they share a cultural background and language with their target population (122). Use of patient navigators is associated with increased cancer screening rates, improved quality of life during cancer treatment, greater retention in care, and higher cancer clinical trial participation in underserved populations (123-125). Financial navigators are increasingly used to guide AYA cancer patients and survivors through financial toxicity and health insurance challenges (126), and expanding these roles to include professionals to guide survivors to appropriate long-term follow-up services may reduce access disparities and improve receipt of survivorship care overall.

Finally, organizations should invest in optimizing technology to enable identification of and provision of services (including transition facilitation) to their AYA survivor populations. As health technology has advanced, electronic health record sharing across institutions, automated educational content generation, digital navigation, clinical support tools, and best practice alerts have all demonstrated potential in delivering evidence-based care (127). These tools should be used to support providers in identifying and providing coordinated, comprehensive, and age-appropriate care to survivors of AYA cancer. In addition, tools for enhancing rapid and effective communication between providers both within and across institutions should be explored, particularly in shared-care models (128).

Interpersonal

Interpersonal barriers resulting from lack of provider training and patient-provider identity discordance can hamper efforts to equitably deliver high-quality survivorship care. Currently, only one-third of PCPs are comfortable managing long-term treatment effects in survivors of AYA cancer (129). Oncologists also report barriers to providing survivorship-focused care, including lack of time and knowledge, especially related to psychosocial needs (130). Furthermore, about 25% of racial and ethnic minority survivors have reported delaying or foregoing care due to discordance with provider in race, religion, native language, or other identity (131). Additionally, identifying as lesbian, gay, bisexual, or as a woman has been associated with delaying or foregoing care due to identity discordance with providers.

Building a diverse workforce of clinicians, including PCPs, equipped to provide survivorship care to diverse survivors is essential. Efforts to expand a diverse clinician workforce can include institutional pipelines and enrichment programs that start before medical school and provide support with admissions preparation, finances, mentoring, and psychosocial support (132). In addition, medical training in oncology and primary care, including continuing medical education, should include education about the health risks and unique needs of diverse survivors of AYA cancer.

Individual

Individual-level barriers to survivorship care include lack of knowledge about care availability, logistical and financial difficulties, and lack of interest in receiving community-based care (133). Survivors of AYA cancer specifically report fear of recurrence, wanting to move on with life, lack of clear follow-up recommendations, time constraints because of other responsibilities, and lack of perceived need as barriers to obtaining survivorship care (134). Multilevel interventions, combining strategies described throughout this section, can address many individual-level barriers. Patient education before transition to survivorship, including the use of survivorship care plans (135,136), can increase knowledge and reduce unmet information needs, and telehealth can reduce logistical barriers. Additionally, psychological interventions can reduce fear of recurrence (137,138) and may be particularly important for survivors of AYA cancer in processing an early and developmentally disruptive threat of mortality (139). Furthermore, supporting self-management through existing tools and programs can enhance survivors’ skills and self-efficacy for health management (140,141). Patient-level interventions also hold promise in increasing awareness of and access to affordable health insurance (142). Critically, at the organization level, clinics should build the capacity to screen survivors for SDoH and connect to available resources to reduce the burden of SDoH and related barriers to survivorship care (143).

Call to action and next steps

Although standardized guidelines are needed, provision of survivorship care to these young but prematurely aging survivors cannot wait. The incidence of cancer among AYAs is growing, as is the population of these survivors, who will experience substantial life disruptions and lifelong health risks resulting from cancer and its treatment. Within health-care systems, efforts are needed to identify survivors of AYA cancer, to consider the needs and challenges of the population, and to plan strategically for their survivorship care and attendant care transitions. Guided by the QCSCF, well-defined models of care can be implemented with attention to the unique needs of survivors of AYA cancer and commonly reported barriers to care. AYA and survivorship champions can help drive practice change (144) to overcome barriers in both oncology and primary care to delivery of comprehensive, high-quality survivorship care (145). Champions can also help generate collaborations or partnerships within and across institutions to improve equitable provision of care in the community. In particular, academic-community collaborations and partnerships are needed to increase access to survivorship care for uninsured and underinsured survivors, who bear a higher burden of adverse SDoH and experience worse health outcomes.

In implementing models of care, providers and health systems can partner with implementation scientists to conduct pragmatic trials, hybrid implementation-effectiveness studies, and natural experiments to advance the field and to guide others in selecting and implementing feasible and effective survivorship care models (146). Concurrently, advocacy is needed to establish research infrastructure, including funding for robust longitudinal studies. Findings from longitudinal studies can inform the development of AYA long-term follow-up guidelines, including risk stratification and recommendations for frequency and duration of screenings. Reimbursement for survivorship care services, including screening for chronic health conditions and secondary cancers, is essential to both incentivize practice change and to ensure equitable access to survivorship care because high out-of-pocket costs present a substantial barrier to equitable provision of care to survivors of AYA cancer.

Despite known risks for adverse long-term outcomes, including chronic health conditions, secondary cancers, psychosocial and financial adversity, and premature death, survivors of AYA cancer lack standardized long-term follow-up guidelines, and few survivors of AYA cancer receive survivorship-directed care. Additionally, there is a paucity of AYA-dedicated or adult clinics with knowledge of the needs of survivors of AYA cancer in academic and community oncology settings. Existing survivorship care models can be adapted to meet the needs of survivors of AYA cancer within a particular institution or health system. As the number of survivors of AYA cancer continues to grow, providing high-quality survivorship care is vital to ensuring long-term health and high quality of life for this at-risk population.

Data availability

No new data were generated or analyzed for this commentary.

Author contributions

Amy Berkman, MD (Conceptualization; Visualization; Writing—original draft), Andrea C. Betts, PhD, MPH (Visualization; Writing—original draft; Writing—review & editing), Melissa Beauchemin, PhD, MSN, CPNP (Visualization; Writing—original draft; Writing—review & editing), Susan K. Parsons, MD, MRP (Writing—review & editing), David R. Freyer, DO, MS (Writing—review & editing), Michael E. Roth, MD (Conceptualization; Visualization; Writing—original draft; Writing—review & editing).

Funding

This work was supported by the National Cancer Institute at the National Institutes of Health (grant numbers P30 CA016672 [MR], P30CA014089 [DRF], and 1R01CA237230 [DRF]) and research support from the Archer Foundation. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Cancer Institute or the National Institutes of Health.

Conflicts of interest

ACB reports consulting for Your Local Epidemiologist.