Oncology Survivorship Care — Part 5: Care Models, Pediatric/AYA Survivorship, Transition of Care, and Financial Toxicity
Risk-stratified survivorship care models, shared care integration, transition from oncology to primary care, pediatric and AYA survivorship, childhood cancer late effects, financial toxicity, and psychosocial support resources.
1. Survivorship Care Models
1.1 Overview of Care Delivery Models
The optimal model for delivering survivorship care depends on the complexity of the survivor’s needs, available resources, and local healthcare infrastructure. No single model is universally superior; rather, the choice of model should be tailored to the patient’s risk level and the capacity of the care system.1 2
Comparison of Survivorship Care Delivery Models
| Model | Description | Advantages | Limitations | Best Suited For |
|---|---|---|---|---|
| Oncology-led follow-up | Oncologist provides all surveillance and survivorship care | Deep cancer expertise; patient comfort and trust; direct access to cancer-specific testing | Limited capacity for growing survivor population; may not address comorbidities or general health promotion; cost to healthcare system | High-risk survivors (complex late effects, high recurrence risk, ongoing targeted therapy); first 2–3 years post-treatment |
| Primary care–led (PCP-led) | Primary care provider assumes full responsibility for surveillance and survivorship care after transition from oncology | Addresses whole-patient health; manages comorbidities; accessible; cost-efficient | Requires adequate PCP training in cancer surveillance; PCPs may lack confidence in cancer follow-up; risk of missed cancer-specific issues | Low-risk survivors ≥3–5 years post-treatment with low recurrence risk and no complex late effects |
| Shared care (co-management) | Oncologist and PCP share responsibilities per a defined care plan; communication is bidirectional | Leverages strengths of both providers; continuity of cancer expertise while addressing general health; most closely aligns with SCP model | Requires excellent communication infrastructure; risk of duplication or gaps if roles not clearly delineated | Most survivors; default recommended model for the first 5 years |
| Nurse practitioner (NP) or physician assistant (PA)–led survivorship clinic | Dedicated survivorship clinic staffed by advanced practice providers with oncology training | Specialized survivorship expertise; protocolized care; standardized SCP delivery; frees oncologist time | Requires institutional investment; may not be available at all centers | Any survivor; particularly useful for intermediate-risk patients |
| Risk-stratified model | Survivors are stratified by risk level (low, moderate, high) and assigned to the appropriate care model accordingly | Efficient resource allocation; matches care intensity to need; reduces unnecessary oncology visits for low-risk survivors | Requires validated risk stratification tools; implementation complexity | All survivors — preferred framework for system-level organization |
1.2 Risk-Stratified Follow-Up Framework
Risk stratification determines the intensity and location of survivorship care. Several national programs have implemented risk-stratified pathways.2 3
Risk Stratification Criteria
| Risk Level | Criteria | Recommended Care Pathway |
|---|---|---|
| Low risk | Early-stage cancer with favorable biology; completed treatment with no significant complications; low recurrence risk; no high-risk treatment exposures (no anthracyclines >250 mg/m², no chest radiation, no alkylating agents); no complex late effects; stable psychological status | Transition to PCP-led care at 1–3 years post-treatment; annual SCP review; supported self-management; clear pathway back to oncology if concerns arise |
| Moderate risk | Intermediate-stage cancer or intermediate recurrence risk; moderate treatment exposures (some cardiotoxic therapy, moderate radiation doses); some late effects requiring monitoring but clinically stable; presence of cardiovascular risk factors | Shared care between oncology and PCP; survivorship clinic visits annually or semiannually; scheduled late effects screening per protocol |
| High risk | Locally advanced or high-grade cancers within first 2–3 years; high recurrence risk; complex late effects (cardiomyopathy, secondary malignancy, severe neuropathy); high cumulative anthracycline dose or extensive radiation; ongoing immunotherapy or endocrine therapy requiring monitoring; significant psychological distress; hereditary cancer syndromes | Oncology-led follow-up with specialist involvement (cardio-oncology, endocrinology, etc.); frequent surveillance; comprehensive multidisciplinary care |
1.3 Essential Elements for Successful Shared Care
| Element | Details |
|---|---|
| Survivorship care plan (SCP) | Completed and shared with PCP at transition; must clearly delineate roles and schedules |
| Communication pathway | Direct line of communication between oncology team and PCP; agreed mechanism for urgent referral back to oncology; shared EHR access when possible |
| PCP education and support | Oncology team provides disease-specific surveillance protocols; continuing education on late effects; decision support tools within EHR |
| Re-entry criteria | Clear clinical triggers for re-referral to oncology: suspected recurrence, new concerning symptoms, abnormal surveillance testing, new late effects requiring specialist management |
| Patient empowerment | Patients receive their SCP and are educated on their surveillance schedule, red flag symptoms, and how to access oncology care if needed |
2. Transition of Care: Oncology to Primary Care
2.1 Transition Process
The transition from oncology-led to primary care–led or shared survivorship care is a critical juncture that requires careful planning to avoid gaps in care, patient anxiety, and miscommunication.1 4
Recommended Transition Steps
| Step | Details |
|---|---|
| 1. Timing | Typically at 1–3 years post-treatment for low-risk survivors; 3–5 years for moderate-risk; high-risk patients may remain in oncology-led care long-term; timing should be individualized |
| 2. Dedicated transition visit | Face-to-face survivorship transition visit with the oncology team to review the SCP, discuss the patient’s concerns and expectations, provide written materials, and introduce the concept of shared or PCP-led care |
| 3. SCP delivery | Provide completed SCP to both the patient and the PCP; ensure the SCP includes all required elements (treatment summary, surveillance schedule, late effects risks, health promotion recommendations, provider roles, re-entry criteria) |
| 4. PCP notification and engagement | Send SCP and a transition letter to the PCP; ideally, a phone call or direct message to the PCP to confirm receipt and answer questions; provide PCP with oncology contact information for future consultations |
| 5. Patient education | Educate the patient about which provider to contact for what issues; provide written red flag symptom lists; ensure the patient understands they are not being “abandoned” but rather transitioning to a new phase of care |
| 6. Safety net follow-up | Schedule a follow-up visit (oncology or PCP) within 3–6 months of transition to ensure the patient has successfully engaged with the new care model |
| 7. Ongoing communication | PCP communicates surveillance test results to both the patient and the oncology team (or flags abnormalities for oncology input); annual SCP review and update |
2.2 Barriers to Effective Transition
| Barrier | Strategy |
|---|---|
| Patient anxiety about leaving oncology | Normalize the transition; reassure that re-referral is always possible; gradual transition (increasing interval between oncology visits before final handoff) |
| PCP uncertainty about cancer surveillance | Provide cancer-specific surveillance protocols with the SCP; offer oncology team as a resource for questions; institutional CME on survivorship care |
| Lack of standardized SCP templates | Use validated SCP templates (e.g., freely available online templates, professional society care plan tools, institutional EHR-integrated templates) |
| Poor communication infrastructure | Leverage shared EHR; establish direct communication channels; use structured referral and counter-referral protocols |
| Time constraints | EHR-integrated SCP templates reduce documentation burden; standardized protocols reduce decision-making burden |
3. Pediatric and Adolescent/Young Adult (AYA) Survivorship
3.1 Scope and Significance
There are an estimated 500,000+ survivors of childhood cancer (diagnosed at age 0–14) and over 600,000 survivors of AYA cancers (diagnosed at age 15–39) in the United States. Five-year survival for childhood cancers now exceeds 85%, but the decades of life lived after cancer treatment expose these survivors to a uniquely high burden of late effects. By age 50, approximately two-thirds of childhood cancer survivors will have developed at least one chronic health condition, and nearly one-third will have a severe or life-threatening condition.5 6
3.2 Unique Considerations in Pediatric/AYA Survivors
| Issue | Details |
|---|---|
| Longer time at risk | Decades of survivorship amplify the cumulative impact of late effects; cardiovascular disease, secondary malignancies, and endocrine dysfunction continue to accrue risk over time |
| Developmental effects | Treatment during periods of growth and development can cause growth impairment, pubertal disorders, neurocognitive deficits, and psychosocial developmental disruption |
| Transition from pediatric to adult care | Must occur with deliberate planning; many childhood cancer survivors are lost to follow-up during the transition from pediatric oncology to adult care |
| Neurocognitive vulnerability | Cranial radiation and intrathecal chemotherapy during brain development cause more severe cognitive effects than in adults |
| Fertility | Many pediatric/AYA patients are treated before fertility preservation is possible (prepubertal) or before they have considered family planning |
| Psychosocial development | Identity formation, educational attainment, employment, social relationships, and insurance access may all be disrupted |
3.3 Long-Term Follow-Up Guidelines for Childhood Cancer Survivors
Comprehensive long-term follow-up guidelines for childhood, adolescent, and young adult cancer survivors provide exposure-based screening recommendations. The following table summarizes key screening recommendations organized by treatment exposure.5
Screening Recommendations by Treatment Exposure — Childhood Cancer Survivors
| Treatment Exposure | Late Effect(s) | Screening | Schedule |
|---|---|---|---|
| Anthracyclines (any dose) | Cardiomyopathy, HF | Echocardiogram | Every 2 years (low-dose: <250 mg/m²); annually (≥250 mg/m² or with additional risk factors); lifelong |
| Chest radiation (any dose) | Cardiomyopathy, CAD, valvular disease, pericardial disease | Echocardiogram; consider stress test at 5–10 years post-radiation for CAD screening | Echocardiogram every 2–5 years based on dose; lifelong |
| Chest radiation (female, ≥20 Gy, age 10–30) | Breast cancer | Mammography + breast MRI | Annually, beginning 8 years after radiation or age 25 (whichever later), but not before age 25 |
| Chest radiation ≥20 Gy | Lung cancer, pulmonary fibrosis | Low-dose CT chest; PFTs as indicated | LDCT annually starting 5 years post-radiation or age 30 (whichever later) |
| Neck radiation | Hypothyroidism; thyroid nodules/cancer; carotid disease | TSH; thyroid palpation/ultrasound if abnormal; carotid ultrasound if ≥40 Gy | TSH annually; thyroid exam annually; carotid ultrasound every 5 years starting 10 years post-RT |
| Cranial radiation ≥18 Gy | GH deficiency, central hypothyroidism, central adrenal insufficiency, precocious or delayed puberty, obesity | Height velocity (children); IGF-1; free T4; AM cortisol; pubertal staging; BMI | Growth monitoring q6 months (children); hormonal testing annually |
| Cranial radiation ≥30 Gy | Hyperprolactinemia, gonadotropin deficiency, meningioma | Prolactin; FSH/LH; brain MRI if neurologic symptoms | Hormonal testing annually; brain MRI as indicated |
| Alkylating agents (high-dose) or TBI | Gonadal failure (male and female); infertility | FSH, LH, testosterone (males) or estradiol (females); menstrual history; semen analysis if desired | At completion of puberty or age 13; annually in symptomatic patients |
| Alkylating agents | t-MDS/AML | CBC with differential | Annually for 10 years post-treatment |
| Cisplatin or carboplatin | Hearing loss | Audiometry | At treatment completion; annually if abnormal or symptomatic |
| Cranial/spinal radiation or high-dose methotrexate | Neurocognitive deficits; leukoencephalopathy | Neuropsychological testing; brain MRI if neurologic symptoms | Baseline neuropsychological evaluation; repeat if concerns about academic or cognitive decline |
| Corticosteroids (prolonged or high-dose) | Osteonecrosis (AVN); osteoporosis | MRI of symptomatic joints; DXA | MRI if joint pain (hips, knees most commonly affected); DXA at entry into long-term follow-up if additional risk factors |
| Bleomycin | Pulmonary fibrosis | PFTs (spirometry, DLCO) | At treatment completion; as clinically indicated for respiratory symptoms |
| Methotrexate (high-dose or intrathecal) or 6-mercaptopurine | Hepatotoxicity | LFTs | Annually during and after treatment; as indicated long-term |
| Nephrectomy or renal radiation | Renal insufficiency; hypertension | BUN, creatinine, urinalysis; blood pressure | Annually |
| Splenectomy or splenic radiation | Encapsulated organism infection risk | Ensure vaccinations (pneumococcal, meningococcal, Hib); provide emergency antibiotics | Lifelong awareness; prophylactic penicillin in children; emergency antibiotic plan |
3.4 Transition from Pediatric to Adult Survivorship Care
The transition of childhood cancer survivors from pediatric oncology to adult-focused survivorship care is a particularly vulnerable period. Up to 70% of childhood cancer survivors are not receiving recommended risk-based follow-up care as adults.6
Key Transition Principles
| Principle | Details |
|---|---|
| Begin transition planning early | Start discussion at age 12–14; formalize transition plan by age 16–18 |
| Health literacy and self-advocacy | Educate the adolescent about their cancer history, treatment exposures, and personal late-effects risks; gradually shift responsibility from parents to the young adult |
| Comprehensive transition summary | Provide a detailed treatment summary and surveillance plan (equivalent to SCP) at the transition visit; ensure the patient has a personal copy |
| Identify adult follow-up provider | Adult survivorship clinic, adult oncologist, or PCP trained in survivorship care; ideally, an introductory visit while still connected to pediatric care |
| Transfer medical records | Complete medical records, including treatment summary, surveillance plan, and all relevant test results, should be transferred to the adult provider |
| Address insurance transitions | Anticipate insurance changes at age 26 (loss of parental insurance in the US); connect with social work and patient navigation resources |
| Continued monitoring | Ensure no gap in surveillance; the adult provider should continue the same exposure-based screening protocol |
3.5 AYA-Specific Survivorship Concerns
Adolescent and young adult (AYA) cancer survivors (diagnosed age 15–39) face challenges that overlap with both pediatric and adult survivors but also have unique features.7
| Concern | Details |
|---|---|
| Fertility | Fertility preservation counseling before treatment is critical; many AYA survivors desire future fertility but may not have been counseled or may not have been able to pursue preservation due to treatment urgency |
| Educational and career disruption | Cancer treatment during formative educational and career years; may need vocational rehabilitation, educational accommodations, or career counseling |
| Financial toxicity | Often early in careers with limited savings and insurance instability; high rates of medical debt |
| Psychosocial isolation | May feel disconnected from healthy peers; “emerging adulthood” development disrupted; relationship and identity concerns |
| Body image and sexuality | Particularly impactful during a period of identity formation; concerns about scars, amputations, infertility, and perceived attractiveness |
| Insurance access | Transition from parental insurance (age 26 in the US); potential for gaps in coverage; pre-existing condition protections are critically important |
| Common AYA cancers | Hodgkin lymphoma, testicular cancer, breast cancer, melanoma, thyroid cancer, sarcomas — each with distinct late-effects profiles |
4. Financial Toxicity
4.1 Definition and Scope
Financial toxicity refers to the financial burden and distress experienced by cancer patients and survivors as a result of the cost of cancer care. It encompasses direct medical costs (out-of-pocket expenses for treatment, surveillance, medications), indirect costs (lost income, reduced work capacity, caregiver burden), and the psychological distress associated with financial hardship. Financial toxicity is increasingly recognized as a significant determinant of health outcomes and quality of life in cancer survivors.8
Prevalence and Impact
| Finding | Data |
|---|---|
| Proportion of cancer survivors reporting financial burden | 30–50% |
| Medical bankruptcy attributable to cancer | Cancer patients are 2.5× more likely to file for bankruptcy than age-matched controls |
| Impact on treatment adherence | 20–30% of cancer patients report cost-related medication nonadherence |
| Impact on survivorship care | Financial concerns cited as a reason for not attending follow-up appointments or surveillance testing |
| Association with outcomes | Financial toxicity is associated with poorer quality of life, psychological distress, and in some studies, increased mortality |
4.2 Screening for Financial Toxicity
Financial toxicity should be assessed as part of survivorship care. Validated tools include:
| Tool | Description |
|---|---|
| COmprehensive Score for financial Toxicity (COST) measure | 12-item validated patient-reported outcome measure; scores range from 0–44 (lower scores indicate worse financial toxicity); COST score ≤23 has been associated with poorer quality of life |
| Single-item financial distress thermometer | 0–10 scale analogous to the distress thermometer; practical for routine screening |
| Distress Thermometer Problem List9 | Includes “practical problems” domain that captures financial and insurance concerns |
4.3 Interventions and Resources
| Intervention | Details |
|---|---|
| Financial counseling and navigation | Dedicated financial counselor or patient navigator to assist with insurance navigation, co-payment assistance, and benefit optimization; should be available at all cancer centers |
| Social work referral | Social workers can connect survivors with government assistance programs (Medicaid, SSDI, SSI), charitable organizations, and community resources |
| Pharmaceutical assistance programs | Manufacturer-sponsored patient assistance programs for high-cost medications; often income-based eligibility |
| Co-payment assistance programs | Foundation-funded programs that help cover out-of-pocket co-payments for specific medications or treatment categories |
| Transportation assistance | Programs offering free or subsidized transportation to medical appointments |
| Employment support | Vocational rehabilitation; workplace accommodations under the ADA; return-to-work programs; knowledge of legal protections against employment discrimination |
| Insurance navigation | Assistance with understanding benefits, appealing denials, and navigating plan options during open enrollment; ACA marketplace navigation |
| Debt management and legal aid | Medical debt negotiation services; legal aid for medical billing disputes; financial planning services for cancer survivors |
| Disability benefits | Guidance on applying for short-term and long-term disability, SSDI, and SSI |
4.4 Clinician Role in Addressing Financial Toxicity
| Action | Details |
|---|---|
| Screen for financial distress | Incorporate financial distress screening into routine survivorship visits |
| Cost-conscious prescribing | Choose equally effective lower-cost alternatives when available; discuss costs of medications proactively |
| Minimize unnecessary testing | Adhere to evidence-based surveillance schedules; avoid unnecessary imaging or laboratory tests that add cost without proven benefit |
| Referral to support services | Proactively refer to financial counseling, social work, and patient navigation services |
| Documentation for disability/workplace accommodation | Provide appropriate medical documentation to support disability claims or workplace accommodation requests |
| Discuss treatment costs | Engage in transparent discussions about the costs of ongoing treatments (endocrine therapy, surveillance imaging) and help patients plan |
5. Psychosocial Support Resources and Services
5.1 Components of Comprehensive Psychosocial Support
| Service | Description |
|---|---|
| Individual counseling/psychotherapy | CBT, acceptance and commitment therapy (ACT), supportive therapy; delivered by psychologists, psychiatrists, or licensed counselors with cancer-specific training |
| Support groups | Peer-led or professionally facilitated; in-person or virtual; cancer type–specific or general survivorship groups; provide normalization, shared experience, and practical advice |
| Caregiver support | Services for spouses, partners, and family members, including caregiver-specific counseling, respite care, and support groups |
| Spiritual care | Chaplaincy services; spiritual counseling; existential distress support; particularly relevant for survivors facing end-of-life fears or meaning-making |
| Patient navigation | Navigators help coordinate care, connect patients with resources, and reduce barriers to care access |
| Rehabilitation services | Physical therapy, occupational therapy, speech-language pathology, cognitive rehabilitation, vocational rehabilitation |
| Complementary therapies | Art therapy, music therapy, yoga, meditation, massage — adjunctive approaches to improve quality of life and manage distress |
| Digital health tools | Apps for symptom tracking, exercise programs, mindfulness, peer support, and survivorship education |
5.2 Recommended Screening Schedule for Psychosocial Needs
| Assessment | Timing |
|---|---|
| Distress screening (Distress Thermometer or equivalent) | At survivorship transition visit; at each follow-up visit (or at minimum annually); at times of clinical transition (surveillance results, treatment changes) |
| Depression screening (PHQ-9) | At survivorship transition visit; annually; more frequently if previous positive screen |
| Anxiety screening (GAD-7) | At survivorship transition visit; annually |
| Fear of recurrence | Annually; around surveillance imaging |
| Financial toxicity screening | At survivorship transition visit; annually |
| Sexual health assessment | At survivorship transition visit; annually; proactively initiated by clinician |
| Social support and isolation assessment | At survivorship transition visit; periodically |
| Cognitive function | At survivorship transition visit; at patient report of concerns; formal neuropsychological testing if screening positive |
6. Summary: Survivorship Care Quality Indicators
The following quality indicators can be used to assess the effectiveness of a survivorship care program:
| Quality Indicator | Target |
|---|---|
| Proportion of survivors who receive a written SCP | ≥80% |
| Proportion of survivors screened for distress | ≥90% at each visit |
| Proportion of survivors receiving cancer-appropriate surveillance per protocol | ≥85% |
| Proportion of survivors counseled on physical activity | ≥90% |
| Proportion of current smokers offered cessation support | 100% |
| Proportion of survivors with documented PCP for ongoing care | ≥90% |
| Proportion of high-risk survivors receiving cardiac surveillance per protocol | ≥85% |
| Proportion of survivors screened for sexual dysfunction | ≥50% (improvement goal) |
| Proportion of survivors screened for financial toxicity | ≥70% |
| Time from treatment completion to SCP delivery | ≤3 months |
References
Nekhlyudov L, Mollica MA, Jacobsen PB, Mayer DK, Shulman LN, Geiger AM. “Developing a Quality of Cancer Survivorship Care Framework: Implications for Clinical Care, Research, and Policy.” Journal of the National Cancer Institute, 111(11): 1120–1130, 2019. ↩︎ ↩︎
Jefford M, Howell D, Li Q, et al. “Improved Models of Care for Cancer Survivors.” Lancet, 399(10334): 1551–1560, 2022. ↩︎ ↩︎
Koinberg I, Langius-Eklof A, Holmberg L, Fridlund B. “The Usefulness of a Multidisciplinary Educational Programme after Breast Cancer Surgery: A Prospective and Comparative Study.” European Journal of Oncology Nursing, 10(4): 273–282, 2006. ↩︎
Mayer DK, Birken SA, Check DK, Chen RC. “Summing It Up: An Integrative Review of Studies of Cancer Survivorship Care Plans (2006–2013).” Cancer, 121(7): 978–996, 2015. ↩︎
Children’s Oncology Group (COG). “Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers.” Version 6.0, 2023. Children’s Oncology Group (COG). ↩︎ ↩︎
Oeffinger KC, Mertens AC, Sklar CA, et al. “Chronic Health Conditions in Adult Survivors of Childhood Cancer.” New England Journal of Medicine, 355(15): 1572–1582, 2006. ↩︎ ↩︎
Coccia PF, Pappo AS, Beaupin L, et al. “Adolescent and Young Adult Oncology, Version 2.2018, NCCN Clinical Practice Guidelines in Oncology.” Journal of the National Comprehensive Cancer Network, 16(1): 66–97, 2018. National Comprehensive Cancer Network (NCCN). ↩︎
Zafar SY, Peppercorn JM, Schrag D, et al. “The Financial Toxicity of Cancer Treatment: A Pilot Study Assessing Out-of-Pocket Expenses and the Insured Cancer Patient’s Experience.” The Oncologist, 18(4): 381–390, 2013. ↩︎
Roth AJ, Kornblith AB, Batel-Copel L, Peabody E, Scher HI, Holland JC. “Rapid Screening for Psychologic Distress in Men with Prostate Carcinoma: A Pilot Study.” Cancer, 82(10): 1904–1908, 1998. (Distress Thermometer development). National Comprehensive Cancer Network (NCCN) Distress Management Guidelines, Version 2.2024. ↩︎