Health Care Transitions among Adolescents and Young Adults with Cancer

Abstract

Survivors of adolescent and young adult (AYA) cancers, defined as individuals diagnosed with a primary malignancy between 15 and 39 years of age, are a growing population with unique developmental, psychosocial, and health-related needs. These individuals are at excess risk of developing a wide range of chronic comorbidities compared to the general population and therefore require lifelong, risk-based, survivorship care to optimize long-term health outcomes. The health care needs of survivors of AYA cancers are particularly complicated given the often heterogeneous and sometimes fragmented care they receive throughout the cancer care continuum. For example, AYA survivors are often treated in disparate settings (pediatric vs adult) on dissimilar protocols that include different recommendations for longitudinal follow-up. Specialized tools and techniques are needed to ensure that AYA survivors move seamlessly from acute cancer care to survivorship care, and in many cases, from pediatric to adult clinics while still remaining engaged in long-term follow-up. Systematic, age-appropriate transitional practices involving well-established clinical models of care, survivorship care plans, and survivorship guidelines are needed to facilitate effective transitions between providers. Future studies are necessary to enhance and optimize the clinical effectiveness of transition processes in AYA cancer survivors.

Introduction

Survivors of adolescent and young adult (AYA) cancers, defined as individuals diagnosed with a primary malignancy between 15 and 39 years of age, are a growing population with unique developmental, psychosocial, and health-related needs.^1–3 The most common cancers in this age group include breast, thyroid, testis, and melanoma, followed by a variety of other tumors including central nervous system tumors, cervical cancer, colorectal cancer, leukemia, lymphoma, and sarcomas.^4,5 While five-year relative survival rates continue to improve over time,⁴ AYA survivors have a well-documented excess risk of developing a wide range of chronic comorbidities^6,7 and subsequent primary malignancies⁸ compared with matched controls, and thus require lifelong risk-based care to optimize long-term outcomes. Specialized tools and techniques are needed to ensure that AYA survivors move seamlessly from acute cancer care to survivorship care and remain engaged in long-term follow-up. This need is particularly significant for survivors of AYA cancers who have likely faced heterogeneous and sometimes fragmented care along the cancer continuum.⁹ More specifically, AYA survivors may have been treated in disparate settings (pediatric vs adult) and/or on dissimilar protocols with different recommendations for longitudinal follow-up^10–13 and may feel like they lack a “medical home.”¹⁴ Thus, while some survivors will transition from acute oncologic care in the pediatric or adult setting to dedicated survivorship programs, others will transition directly from acute oncologic care to primary care providers without much-needed AYA-specific supports in place.¹⁵ Systematic, age-appropriate transitional practices that address various care models and practices are needed to ensure that survivors progress from acute care settings to programs that provide AYA-tailored, guideline-concordant long-term follow-up care.

The current review summarizes salient concepts relevant to care transitions in survivors of AYA cancer. By focusing on literature published in the last two decades, we herein provide an update on contemporary principles of transitions as they apply to the general population and specifically to survivors of AYA cancers; survey current models of risk-based care; and provide an update on active trials studying transition practices in survivors of AYA cancers.

Health care transition in the general population

Health care transition is the deliberate, planned process of transferring care from a pediatric-based to adult-based health care setting.¹⁶ At a high level, the process consists of a preparatory phase (often occurring in the pediatric setting), the transfer between pediatric and adult health care settings, and lastly a period of integration into adult-based care.¹⁶ Unfortunately, health care transitions are susceptible to a number of barriers that impede continuity and access to care.¹⁷ For example, complex medical populations such as children or adolescents with special health care needs,^18,19 defined broadly as “those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally,” confront multi-level barriers to health care transitions. These include complex social challenges (e.g., insurance, employment) and a lack of dedicated resources to support transitions, care team training, and/or structured transition processes.¹⁹ These barriers no doubt contribute to risk for disruptions in or complete loss to follow-up. For example, in a systematic review of 17 studies including over 6,000 patients with congenital heart disease, discontinuity of care was identified in 3.6% to 62.7% of patients, with a pooled estimated proportion of 26.1%.²⁰ Such high proportions are striking in this vulnerable population given that lapses in care have been shown to be associated with a 3-fold increased risk of requiring an urgent surgical or catheter-based cardiac intervention.²¹ Similarly, poorer health outcomes have been observed with discontinuous care among pediatric and AYA populations with other chronic health conditions (CHCs), such as cystic fibrosis,²² cerebral palsy,²³ and diabetes.²⁴ Conversely, higher continuity of care has been associated with lower health care costs and health care use across various patient populations from multiple countries and settings,²⁵ emphasizing the importance of prioritizing effective and seamless health care transitions, particularly in the at-risk AYA population.

Widespread recognition of the importance of uninterrupted, thorough health care transitions led to the establishment of the United States funded national resource center Got Transition^® (https://www.gottransition.org), designed to improve transition from pediatric to adult health care systems through the use of evidence-based strategies.²⁶ Accordingly, this resource has anchored transition strategies to the Six Core Elements of Health Care Transition^™, which define basic components of a structured transition process, as well as supportive clinical practice tools. While various approaches exist, Got Transition^® has been endorsed by the 2018 Clinical Report on Health Care Transition, collaboratively put forth by the American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Physicians.²⁷ The Six Core Elements^™ include 1) development, discussion, and sharing of one’s transition and care policy/guide, 2) tracking of progress utilizing a flow sheet registry, 3) assessment of self-care skills and provision of education for identified needs, 4) development of a health care transition plan with a medical summary, 5) transfer to adult-centered care in an adult practice, and 6) confirmation of transition completion and solicitation of consumer feedback.²⁶ The Six Core Elements^™ approach can be adapted to the specific needs of individual populations with chronic disease, and provides the foundation for a structured, systematic approach to transition. For example, Johnson and colleagues adapted this strategy to develop and pilot a program to transition neurosurgical adolescent patients with indwelling shunts to adult care and found that the approach was feasible and remained in use at the time of publication.²⁸ Similarly, others have begun to build upon these elements in order to optimize transition processes for medically complex groups.²⁹

Transition in AYA survivors

Children and young adolescents with cancer are a high-risk population with special health care needs.³⁰ Intuitively, there is a clear need to similarly consider AYA cancer survivors as a population with special health care needs, particularly as risk of adverse health only increases over time for this population. Figure 1 demonstrates the contrast between cumulative burden and the traditionally utilized cumulative incidence, which reflects the proportion of individuals who have experienced the new onset of any chronic condition at a given timepoint. For example, one can observe that by age 50 years, the cumulative incidence of grade 1–5 CHC is similar between survivors and community controls, whereas survivors experience greater than 2-times the cumulative burden, or average number of conditions at the same timepoint. Similarly, survivors generally experience 2-times the cumulative burden of severe to life-threatening (grades 3–5) CHCs compared to peers, and without evidence of plateau over time (Figure 1).^31,32 As also reported from SJLIFE, survivors of AYA cancers specifically experience a 4-fold increased risk of developing severe to life-threatening CHCs. Moreover, this population has been shown to be at increased risk of developing the most commonly disabling conditions experienced by the general United States population at key health care transition ages (i.e., 18 and 26 years) (Figure 2),³³ highlighting the medical vulnerability of these individuals and the need for systematic transition practices and longitudinal risk-based care.

Figure 1.

Cumulative incidence of A) grade 1–5 and B) grade 3–5 chronic health conditions, and cumulative burden of C) grade 1–5 and D) grade 3–5 chronic health conditions in survivors and community controls by age in years in the St. Jude Lifetime Cohort (SJLIFE) Study. SJLIFE is a longitudinal study among five-year survivors of childhood cancer, diagnosed and treated at St. Jude Children’s Research Hospital who undergo systematic medical record abstraction for treatment exposures and chronic health conditions, and prospective, comprehensive laboratory and clinical assessments at study entry and recurring at approximately 5-year intervals. The cumulative burden reflects the average number and severity of CHCs experienced by survivors at a given timepoint. Reproduced with permission from Ehrhardt, et al. Nat Rev Clin Oncol. 2023. Oct;20(10):678–696.

Figure 2.

Distribution of cumulative burden of higher severity, potentially disabling chronic health conditions in the St. Jude Lifetime Cohort (SJLIFE) study at ages 18 and 26 years. SJLIFE is a longitudinal study among five-year survivors of childhood cancer, diagnosed and treated at St. Jude Children’s Research Hospital who undergo systematic medical record abstraction for treatment exposures and chronic health conditions, and prospective, comprehensive laboratory and clinical assessments at study entry and recurring at approximately 5-year intervals. The cumulative burden reflects the average number and severity of CHCs experienced by survivors at a given timepoint. “Cancer” noted in the figure key refers to subsequent cancers. ALL, acute lymphoblastic leukemia; AML, acute myeloid leukemia; CNS, central nervous system; HL, Hodgkin lymphoma; NB, neuroblastoma; NHL, non-Hodgkin lymphoma; RB, retinoblastoma; STS, soft tissue sarcoma. Reproduced with permission from Ehrhardt, et al. Pediatr Blood Cancer. 2021. 68(6):e29030..

The wide diagnostic age range of AYA cancers contributes heterogeneity and variability to the health care transition patterns observed in this population. Early in the survivorship period, survivors may be followed by either pediatric or adult health care providers, depending on attained age. For example, acute lymphoblastic leukemia is frequently diagnosed in children <5 years of age, therefore requires an earlier health care transition between specialty and PCPs than between pediatric and adult health care settings and providers. Conversely, a teenager diagnosed with Hodgkin lymphoma may already be under the care of an adult provider and thus require only one health care transition or may require both transitions simultaneously. Thus, an AYA survivor may experience two healthcare transitions (oncology to primary care and pediatric to adult providers), occurring either simultaneously or at separate timepoints within the cancer trajectory.

Transition practices at each of these junctures vary widely across treating institutions,^34,35 with recent surveys showing that very few providers use standardized transition assessments³⁶ or plans. Each of these nuances represents an opening for discontinuity or loss to follow-up of care and subsequent nonadherence to recommend screening guidelines, and therefore a potential missed opportunity for early detection, prevention, and treatment of possible late effects. Therefore, systematic transition plans, with special attention to key age-based and developmental milestones, are critical to ensure continued survivor engagement in long-term follow-up.^37,38

For AYAs with other chronic diseases (e.g., cystic fibrosis, congenital heart disease)^39–42 who require frequent and lifelong medical visits and/or therapeutic intervention directed by specialty providers (e.g., pulmonology, cardiology follow-up), transition planning can occur at the fixed timepoints proposed by Got Transition^®.²⁶ Conversely, AYA cancer survivors will often exhibit no evidence of late effects at specific times of transition and may have limited knowledge of their prior therapy and long-term risks.^43,44 These gaps in knowledge likely contribute to the well-documented discontinuity of care with oncology or cancer survivorship providers⁴⁵ and more broadly speaking, steady decline in receipt of survivorship care over time.^46–48

To fill this gap, many have advocated for specialized transition programs that are tailored to the AYA survivor’s developmental stage and unique needs.^49,50 The trajectory from adolescence to emerging adulthood is typically characterized by increasing autonomy^51,52 and growing emotional regulation and executive functioning over time.⁵³ Many survivors, however, report interruptions in key developmental milestones, such as education completion,⁵⁴ finding and holding a job,^55,56 and maintaining mature relationships,⁵⁷ due to the cancer experience.¹⁹ These events may lead to delayed or regressed development and thereby hinder transitions to independence that would be expected for age-matched peers. AYA-specific transition readiness assessments^58,59 may be useful adjunct tools to identify individuals who are ready to transition to adult care, or perhaps not yet ready despite normative age-related cutoffs.

Optimal transitional practices should incorporate a core set of priorities that have been articulated by AYA cancer survivors.^60–62 These include a desire for flexible and individually tailored transitions with effective communication and continuity of providers during the transition process.⁶³ Prior qualitative work has highlighted survivors’ desire for integration of discussions of financial hardship, fertility services, and psychosocial health into long-term care programs.^62,64 Efforts should be made to incorporate these concerns into AYA survivorship programs.

Barriers to transition in AYA cancer survivors

While theoretically grounded transitional programs can be designed to accommodate these core priorities, barriers to transition must be recognized and addressed prior to implementing these programs. At the level of the individual AYA survivor,^65,66 core health beliefs about being well and/or not wishing to return to a system that threatens that perceived identity, instills fear about late effects or cancer recurrence, and/or treats them as ill,^38,67 may preclude transition to survivorship care. This may reflect a unique barrier among survivors of AYA and other cancers, as “cure” of the underlying cancer likely contributes to lack of personal knowledge and subsequent misperceptions about risk of adverse late effects of cancer treatment justifying the need for lifelong survivorship care.^68,69 Of equal importance are structural barriers to care,⁶⁹ including disparities to access based on income, race/ethnicity, or gender; the direct and indirect costs of care (co-payments and health insurance); limited transportation options to the treating institution, and others.⁷⁰

Provider-level barriers may also impede successful and seamless transition. Fundamental knowledge deficits about the need for risk-based screening persist among both pediatric and adult providers. Despite the wide availability of national guidelines from various groups, including the Children’s Oncology Group (COG),⁷¹ PanCare,⁷² the Scottish Intercollegiate Guidelines Network,^71,73 and global efforts to harmonize recommendations for the more highly prevalent late effects experienced by survivors of pediatric, adolescent and young adult cancer,⁷⁴ familiarity and implementation of recommended evidence-based guideline care is low outside of pediatric and/or AYA-focused survivorship programs.⁷⁵ In the United States, the COG Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent and Young Adult Cancers^13,76 have been publicly available without charge for over two decades (www.survivorshipguidelines.org), yet pediatric oncologists,⁷⁷ pediatric PCPs,⁷⁸ family physicians,⁷⁹ and general internists⁸⁰ have demonstrated a lack of familiarity with these guidelines. In one survey of 1,110 United States general internists, only 5.4% of respondents recommended appropriate breast, thyroid, and cardiac surveillance concordant with the COG guidelines in response to a clinical vignette,⁸⁰ thus underscoring the need for improved provider education and novel strategies to improve dissemination and implementation of the guidelines across the care continuum.

Notably, much of the literature on transition in AYA survivors, and associated barriers, has emerged from studies of childhood and adolescent cancer survivors entering adulthood.^{34,63,66,81–89} Beyond single-center, disease-specific reports,^90,91 and the documented discomfort of adult PCPs in following long-term survivors,^92–94 there is very limited data available on transition of young adult survivors who move directly from acute oncologic care to longitudinal care by the primary care provider. Additional work is needed to elucidate successful approaches to transition, as well as unique barriers that need to be overcome, in this population.

Models of survivorship care and role of transition

One approach to meeting the diverse health care transition needs of cancer survivors has been to incorporate a variety of models of care delivery into clinical practice (Table 1). Examples include community based shared-care, pediatric long-term follow-up, disease-specific, and comprehensive survivor program models.⁹⁵ All of these approaches encounter barriers to successful implementation, and consequently, none has proven to be clinically superior to the others likely related to the diversity of clinical settings and resources available to support survivorship care.⁹⁶

Table 1.

Characteristics of available models of care utilized to deliver cancer survivorship care

Model components	Models of Care
	Consultative care	Advanced practice provider (APP)-led survivorship care	Multidisciplinary survivor care (includes pediatric long-term follow-up [LTFU] care)	Disease-specific survivor care	Shared-care
Team members	Oncologist or oncology APP	Oncology APP	Physician trained/experienced in survivorship Oncology APP Social worker Dietician Psychologist Administrator Consulting physicians	Physician trained/experienced in survivorship Oncology APP Social worker Dietician Psychologist Administrator Consulting physicians	Oncologist PCP
Key features	One-time visit	Extension of care continuum Can be embedded within treatment team	Team-based risk-based care Pediatric LTFU largely limited to pediatric and young adult survivors	Limited to single-disease groups, often of highest risk or of greatest engagement	PCP maintains ongoing care throughout cancer treatment
Health Care Roles
Oncology	Cancer therapy	Cancer therapy	Cancer therapy	Cancer therapy	Cancer therapy LTFU guidance Development of a Survivorship Care Plan
Survivorship	LTFU guidance Development of a Survivorship Care Plan	LTFU guidance Development of a Survivorship Care Plan Facilitating/Obtaining recommended risk-based care	LTFU guidance Development of a Survivorship Care Plan Facilitating/Obtaining recommended risk-based care	LTFU guidance Development of a Survivorship Care Plan Facilitating/Obtaining recommended risk-based care	NA
Primary care provider (PCP)	Routine health maintenance Acute care after cancer treatment completion Management of co-morbid disease	Routine health maintenance Acute care after cancer treatment completion Management of co-morbid disease	Routine health maintenance Acute care after cancer treatment completion +/- Management of co-morbid disease	Routine health maintenance Acute care after cancer treatment completion Management of co-morbid disease	Routine health maintenance Acute care after cancer treatment completion Management of co-morbid disease Facilitating/Obtaining recommended risk-based care
Transitions of care	PCP to Oncology at diagnosis Oncology to PCP at variable timepoints No transfer to specialized survivorship clinic	PCP to Oncology at diagnosis Oncology to PCP at variable timepoints	PCP to Oncology at diagnosis Oncology to PCP at variable timepoints Oncology to pediatric LTFU at 2–5 years after completion of therapy	PCP to Oncology at diagnosis Oncology to PCP at variable timepoints	PCP to Oncology at diagnosis Oncology to PCP ~1–2 years after cancer therapy Timing can be modified via a risk-stratified approach
Communication timepoints	One-time communication Availability thereafter as questions arise	Institutionally-dependent timepoints As needed patient to provider contact for questions	Institutionally-dependent timepoints As needed patient to provider contact for questions	Institutionally-dependent timepoints As needed patient to provider contact for questions	Periodic communication, even after transfer Frequency dependent upon individual patient risk and comorbidities As needed patient to provider contact for questions
Strengths	Resource lean Does not disrupt oncology/patient or PCP/patient relationships	Relatively resource lean May be delivered in person, by telephone, or online	“One-stop” shop Emphasis on psychological well-being, symptom management, and overall quality of life	Concentrates disease-based expertise on more uniform population	Optimizes adherence to oncology and primary health maintenance when roles clearly defined Maintains therapeutic relationships with all providers Allows individual providers to focus on strengths of care
Weaknesses	Limited opportunity to reinforce survivorship education and resource	Embedded variations require additional space allocation and present reimbursement challenges	Resource intense Limited adaptability to high-volume practices	May create institutional inequity, focusing resources on a single population rather than survivors in greatest need	Potential for omission and redundancy in care if communication is poor regarding roles and responsibilities

Selection of an individual model requires introspective evaluation of one’s own resources, assessing closely for availability of those necessary to support an individual approach. For example, while the shared-care approach requires relatively limited resources, robust and clear communication is necessary to designate responsibilities for both the PCP and oncologist. In academic settings with ample access to specialty services, one may consider a comprehensive survivorship program that relies on access to multidisciplinary subspecialists (e.g., cardio-oncology) and care providers (e.g., social work) in order to provide a timely, often “one-stop shopping” approach.

While the latter has often been considered the “gold-standard” approach, it is extremely resource intensive and may not be necessary and/or feasible in order to provide high-quality care across settings. For example, the shared-care approach was demonstrated to be equally effective with respect to the primary outcome of recurrence-related serious events or the secondary outcome of adverse health-related quality of life in women in with low-stage breast cancer randomized to follow-up with their oncologist (i.e., usual care) vs. with their PCP.⁹⁷

Risk-stratified approaches to care

Optimizing systematic care delivery for the growing population of AYA cancer survivors is challenging considering the multimorbidity and heterogeneous spectrum of CHCs survivors experience.³¹ As summarized in this review, several approaches have been taken to address survivors needs, including development of clinical practice guidelines,⁹⁸ interventions to improve adherence to screening,^99–101 and implementation of various care delivery models. Despite these efforts, most AYA cancer survivors are not receiving recommended care. Existing guidelines couple discrete exposures (e.g., anthracycline chemotherapy) to specific CHCs (e.g., cardiomyopathy). In community practices, this information can be challenging to obtain and act upon, with a substantial proportion of PCPs endorsing discomfort managing survivors due to unfamiliarity with specific recommendations.¹⁰² Moreover, many common complications survivors experience (e.g., depression) may not be associated with discrete exposures, thus it is difficult to predict risk. Because of the challenges associated with guideline implementation in primary care settings, some have proposed increasing routine access to survivorship clinics. However, these are limited in number and often inadequately resourced to accommodate all survivors;⁹⁶ therefore, this is not generalizable.

One European strategy to deliver tailored survivorship care allocates the intensity of care across low-, moderate-, and high-risk tiers based strictly upon the known adverse sequelae of previously received cancer treatments. This approach merges features of multiple care models, resulting in: 1) supported self-management for low-risk survivors, 2) shared care for moderate-risk survivors, and 3) complex case management for high-risk survivors with intensive health care needs.⁹⁶ The leading example of this model has been utilized in the UK, where the National Cancer Survivorship Initiative (NCSI) developed a tiered-care approach in an effort to address survivors’ needs.¹⁰³ In the first iteration patients were stratified using only disease and treatment-related factors. For example, a survivor of germ cell tumor treated with surgery alone was categorized as Level 1 (low-risk), whereas a hematopoietic cell transplant survivor was classified as Level 3 (high-risk; Table 2). Following implementation, it was quickly recognized that this approach did not account for changing variables, unique to individual patients, that may support movement between groups. For example, a hematopoietic cell transplant survivor treated with minimal transplant conditioning, with no adverse health complications, who is adequately supported in the primary care setting may not require intense survivorship care and could be downgraded to Level 2 care. To address this problem, a revised approach was put forth (bolded additions noted in Table 2).

Table 2.

Modified risk-stratification model utilized in the United Kingdom for childhood cancer survivors more than 5 years from completion of treatment.

Component	Level 1	Level 2	Level 3
Patient/Treatment Characteristics	● Surgery alone ● Low risk chemotherapy	● Chemotherapy ● Low dose cranial radiation (<24 Gy) ● Genetic cancer predisposition (evident at any point in pathway) ● Includes patients requiring psychological support	● Radiation (except low dose) ● Megatherapy ● Multiple relapses or multiple second primary malignancies ● Those with learning difficulties or concern that lower intensity follow-up may not provide safe/appropriate care ● Those with onging late effects ● Patients treated with novel drugs/biological modifiers who need careful follow-up (should be part of a research program)
Delivery	● Primary care led support	● Late effects nurse or primary care	● Medically supervised late effects clinic ● Doctor/Nurse with late effects expertise
Follow-up	● 1–2 years ● No routine specialist follow-up ● Care plan detailing specialty for investigations/monitoring ● Investigations/Monitoring includes routine primary care tests (e.g., blood pressure) ● Only abnormal results should be reported to the survivorship care coordinator	● 1–2 years ● Variable depending on need ● Optimum care includes 1–2 yearly virtual reviews by specialist center ● Care plan regarding investigations/ monitoring from specialist center ● May require interval recall to specialist ● Identify key worker at specialist’s center to support patient/primary care	● Annual
Examples	● Wilms stage I/II ● Germ cell tumors (surgery only) ● Single system Langerhans cell histiocytosis ● Acute lymphoblastic leukemia without radiation ● All others with low/moderate dose chemotherapy and no predicted significant late risk of morbidity	● Majority of patients (e.g., acute lymphoblastic leukemia in first remission)	● Brain tumors ● Post bone marrow transplant ● Stage 4 patients of any tumor type

Bolded italics reflect components added at modification, whereas non-bolded reflect original recommendations. Adapted from NHS Improvement. Models of care to achieve better outcomes for children and young people living with and beyond cancer. In: Service NH, editor. Leicester, UK: National Health Service, 2013:1–48.¹²¹

While this approach provides a reasonable scaffold for stratification, it overlooks key factors to consider in determining which patients may benefit from more frequent interaction with the survivorship care team at the cancer center to support their access to services and resources versus follow-up in a community setting.^104,105 For example, socioeconomic (e.g., insurance status)^106,107 and geographic (e.g., distance from care) constraints^108,109 may preclude access to specialized providers to address cancer treatment-related toxicities uncommonly encountered in primary care settings. In addition, the burden of CHCs (total number and severity),¹¹⁰ and the impact of individual CHCs on self-reported daily functioning (i.e., health-related quality of life) may challenge identification of community providers comfortable caring for survivors with medically complex needs.^111,112 Finally, it is important that care stratification consider the fluidity of risk (e.g., lapses in care with medical transitions) and the potential for survivors to move between strata, as changing risk profiles may require a change in venue of care to address escalating medical or psychosocial needs. Thus, understanding the impact of factors beyond risk of incident CHCs associated with cancer treatments on risk stratification, especially within resource-constrained health care systems, is essential to meeting survivors’ need and represents an important focus of future research.

Intervention trials to improve transitions among AYA survivors

Health interventions among AYA survivors have largely focused on promoting the practice of healthy behaviors, symptom management, and adherence to surveillance recommendations.⁷⁵ Few studies have concentrated on optimizing transitions. There are several small studies assessing the feasibility and acceptability of structured transition programs⁸⁹ or different modes of transitional practice,^113,114 and one larger ongoing study assessing multi-level barriers to successful transition (The Improving Support for Survivors Engaged in Transition (IS SET) study [NCI P30 CA138292]). Beyond these, there are few active intervention trials targeting transitional practices in this population. This is surprising given the large number of trials seeking to improve transition in other AYAs with chronic diseases of childhood or adolescence,^115–120 and thus represents another important knowledge gap in the AYA population.

Active intervention trials to improve transition among AYA survivors include the Re-Engaging AYA Survivors in Cancer-Related Healthcare (REACH) study [NCI R01 CA273328], a sequential multiple assignment randomized trial evaluating a low-touch intervention consisting of “nudge” text messages and informational resources compared to written information (usual care). Depending on initial responsiveness to the intervention, AYA survivors may then be re-randomized to a more intensive intervention or maintenance phase with the goal of optimizing AYA survivor engagement in cancer-related follow-up care. Other ongoing interventions are assessing digital platforms to improve survivor knowledge of potential late effects and/or adherence to surveillance guidelines (see Table 3), which may be critical adjuncts to the transition process if shown to be efficacious. Additional AYA-specific work is needed to target multi-level barriers to successful transition and inform best practices for continued engagement in long-term AYA survivorship care.

Table 3.

Ongoing research studies with potential application to transitions of AYA cancer survivors. Studies were identified using NIH RePORTER and clinicaltrials.gov.

Study	Setting & Target Population	Intervention & Duration
Evaluation of the Utility of a Transition Workbook in Preparing AYA Cancer Survivors for Transition to Adult Services: A Pilot Study	Pediatric tertiary care center (United States); AYA cancer survivors	Transition workbook; 5–6 months
Re-Engaging AYA Survivors in Cancer-Related Healthcare (REACH) Study (R01 CA273328)	Pediatric tertiary care center (United States); AYA cancer survivors	Sequential multiple assignment randomized trial (SMART) to evaluate a low touch intervention consisting of “nudge” text message and informational resources compared to usual care (written information) followed by re-randomization to stepped up conditions for non-responders; 9 months
An INteractive Survivorship Program to Improve Healthcare REsources [INSPIRE] for Adolescent and Young Adult (AYA) Cancer Survivors (U01 CA246659)	Five tertiary care centers (United States); AYA cancer survivors	Randomized trial of a self-management program, INSPIRE, delivered by interactive digital cross-device options and stepped care telehealth coaching, compared to the active control arm to improve cancer-related distress and health care adherence; 12 months
Onco-primary care networking to support TEAM-based care - the ONE TEAM Study122 (R01 CA249568)	Tertiary care center (United States); adult cancer survivors	Cluster-randomized controlled trial with clustering at the primary care clinic level to optimize the management of comorbidities during and after cancer therapy; 18 months
SurvivorLink: Scalability of an Electronic Personal Health Record for Cancer Survivors and Caregivers at Pediatric Cancer Centers123 (R01 CA218389)	Five cancer treatment centers (United States); childhood cancer survivors and their families, providers, researchers	Evaluation of utilization and impact of SurvivorLink, an IT system designed to serve as a personal health record for survivors, on patient and provider awareness of survivor issues and percentage of patients receiving recommended survivor care; 12 months
Re-engage Pilot Study124 (Australian Federation of Graduate Women Inc. Barbara Hale Fellowship, The Kids’ Cancer Project, and a Cancer Council NSW Program Grant)	Large tertiary care center (Australia) >16-year-old survivors of childhood cancer not actively receiving cancer-related care	Nurse-led eHealth intervention designed to improve survivors' health-related self-efficacy, targeted at survivors disengaged from follow-up. Pilot was found to be acceptable and feasible; further work will be needed to test the efficacy of the program; outcome measured at one- and six-months post-intervention; 6 months
Digital Self-Management and Peer Mentoring Intervention to Improve the Transition from Pediatric to Adult Health Care for Childhood Cancer Survivors83 (R01 CA282147)	(United States)	Assessment of the efficacy of Managing Your Health (app + peer mentoring) compared with educational control in a two-arm randomized trial of 300 young adult survivors of childhood cancer currently ages 18–25 years old; 12 months
Improving Support for Survivors Engaged in Transition (IS SET) (P30 CA138292)	(United States) YA survivors, their parents, local and national healthcare providers	Mixed-methods evaluation of organizational barriers and facilitators to successful transition of young adult survivors of childhood cancer to adult health care settings

Summary

In conclusion, survivors of AYA cancers are at increased risk of adverse health compared to peers. This risk may be exacerbated at times of health care transitions, which are fraught with barriers both prevalent in the general population and those unique to cancer survivors. Systematic health care transitions, which may involve various models of care, survivorship care plans, and survivorship guidelines can facilitate seamless, effective transition between providers, although novel, optimal approaches at various points in the cancer continuum still require delineation. Future studies are necessary to enhance and optimize the clinical effectiveness of transition processes.

Context Summary.

Key Objective

What are the salient concepts relevant to health care transitions in survivors of AYA cancer?

Knowledge Generated

By summarizing literature published in the last two decades, the current review provides an update on contemporary principles of health care transitions as they apply to the general population and to survivors of AYA cancers specifically, an overview of current models of risk-based survivorship care, and a summary of active trials studying transition practices in survivors of AYA cancers.