Why Young Cancer Survivors Keep Falling Through the Cracks of New Care Standards

More than two million Americans are now living with the aftermath of a cancer diagnosed during adolescence or young adulthood, and roughly 86,000 more join them each year. Thanks to five-year survival rates approaching 86 percent, most of these adolescents and young adults—clinicians call them AYAs—will live for decades after their diagnosis. But survival comes at a price: elevated lifetime risks of cardiovascular and respiratory disease, kidney and liver damage, infertility, frailty, accelerated aging, and psychological distress that can outlast the tumor by many years. A new commentary published in the Journal of Cancer Survivorship argues that the nation’s boldest attempt to standardize follow-up care for these survivors is running into an unexpected obstacle—not resistance from clinicians, but the sheer difficulty of measuring whether the care exists at all.

The work, led by Andrea C. Betts of the University of Texas Health Science Center at Houston together with the AYA National Standards for Cancer Survivorship Care Consortium, synthesizes lessons from five studies funded by the National Cancer Institute. The studies spanned nine health care systems across seven states—California, Florida, Minnesota, New Jersey, New York, Texas, and Washington—including seven NCI-designated comprehensive cancer centers, a large integrated health care system, and a county safety-net hospital. Using retrospective cohort and mixed-methods designs, the teams mined electronic health records, surveyed AYAs, clinicians, and administrators, and conducted in-depth interviews and focus groups with survivors diagnosed between 2014 and 2024, aged 15 to 44 at diagnosis, predominantly female, and racially and ethnically diverse. Their cancers reflected the typical AYA spectrum: brain tumors, breast and colorectal cancer, gynecologic malignancies, leukemia, lymphoma, melanoma, sarcomas, testicular and thyroid cancers.

The benchmark against which all of this care was measured is the new National Standards for Cancer Survivorship Care, a framework that defines the essential components of a survivorship program—from screening for late effects to psychosocial assessment and referrals to supportive services. On paper, many of the standards look tailor-made for measurement through structured electronic health record data. Take the recommendation to assess emotional and psychological effects of cancer and refer patients for treatment when needed. In theory, an evaluator could simply count documented screenings for depression, anxiety, or distress, categorize the scores, and track referrals to behavioral health for patients whose scores crossed a threshold. In practice, the researchers found, that seemingly simple pathway is riddled with hidden decision points that can quietly distort the picture of care.

The first and most formidable challenge is simply identifying a longitudinal cohort of AYA survivors inside the record system. This is a population in constant motion. Survivors change insurance plans, move across state lines, and bounce between pediatric and adult care, oncology and primary care. A young woman might receive her diagnosis and treatment at an academic cancer center, undergo maintenance therapy at a community cancer center after relocating, and eventually land in a primary care practice where the original cancer diagnosis is lost or altered in the record. If a survivor cannot be reliably identified, she cannot be counted—and if she cannot be counted, the quality of the care she receives cannot be assessed.

Even when a survivor is successfully identified, the data available to any single institution are fragmentary. If the academic cancer center that treated the initial tumor tries to evaluate distress screening rates among its AYA population, its electronic health record contains no information about what happened after the survivor transferred elsewhere. The assessment is truncated at the moment of the care switch—and unless the evaluation team can detect that the switch occurred, the survivor may be incorrectly recorded as never having been screened. Defining denominators, the pool of patients eligible for a recommended service, poses its own problems. Fertility service referral, a near-universal recommendation for this population, illustrates the trap: a referral may be documented, but whether the patient actually saw a fertility specialist in a different system, declined the service, was unable to afford it, or was never offered it may live only in free-text visit notes, invisible to structured queries. Capturing true outcomes, the authors conclude, likely requires linking records to claims data, surveys, and qualitative sources.

The human side of the measurement problem proved just as thorny. AYAs themselves often have limited awareness of what survivorship care even is, shaped by developmental stage, competing life priorities such as school and work, and inconsistent communication across the many settings they pass through. Many have little prior experience navigating the health care system and report diagnostic delays and access struggles that erode their confidence that their complex needs will be met. Clinicians, meanwhile, operate under fundamentally different models: pediatric oncology is family-centered and multidisciplinary, while adult oncology places the burden of navigation squarely on the patient. The field also lacks validated patient-reported outcome and experience measures that span the full developmental range of the AYA population, undermining comparability across studies and systems.

Strikingly, the studies found that clinicians’ and administrators’ perceptions of the survivorship care being delivered diverged from what AYAs themselves reported receiving. Survivors described a deficit of evaluation on issues that matter most to them—financial concerns, insurance worries, fertility—and in qualitative interviews they described poor coordination across health systems and a sense of being personally responsible for driving communication between providers just to obtain needed care. Clinicians and administrators, for their part, endorsed the importance of evaluation under the new standards but pointed to implementation barriers, including the geographic mobility and fragmented care that make AYAs so hard to follow in the first place.

There is also a deeper conceptual tension. The survivorship standards were designed for universal application to all cancer survivors, yet some clinicians interviewed in the studies were uncertain how the standards would specifically move the needle for AYAs beyond their general applicability. Generating and disseminating standards, clinicians emphasized, is necessary but not sufficient; the harder task is making them change care for individual patients. Because AYAs represent a small fraction of adult cancer patients while facing decades of elevated risk and distinct medical, psychosocial, and financial concerns, institutions may need to adapt implementation by age group. The researchers suggest concrete examples: fertility preservation and restoration should be explicitly highlighted for AYAs with established referral pathways and identified financial assistance resources; insurance assessments should account for limited health insurance literacy and prepare survivors for coverage changes that coincide with life transitions, such as aging out of parental plans at 26; and psychosocial and financial screening should be age-appropriate enough to capture the realities of young adulthood.

The path forward, the authors argue, demands investment at both policy and research levels. Data infrastructure must be strengthened and data sharing enabled within and across health systems, because the same fragmentation that hampers research also hampers care coordination for a population that may change care sources multiple times across a lifetime. Linking health system data to population-based sources would allow evaluation of the standards at scale, though existing national resources such as SEER–Medicare cover only adults 65 and older and offer little for AYAs. Critically, future efforts must extend beyond academic centers into community oncology settings, where most AYAs actually receive their care, and into primary care, which is increasingly tasked with lifelong survivorship follow-up. And because AYA survivors are a relatively rare population, single-site studies—even at large centers—lack the sample size, diversity, and follow-up needed for meaningful longitudinal evaluation. Multisite collaborations, the researchers conclude, are the only realistic route to coordinated cohorts large enough to compare how the standards are measured and experienced across systems, and to test interventions that could finally translate a well-intentioned national framework into tangible, equitable care for young survivors.

Subject of Research: Assessing alignment of national cancer survivorship care standards for adolescent and young adult cancer survivors across US health systems

Article Title: Understanding and advancing alignment of the national standards for cancer survivorship care for adolescents and young adults: challenges and opportunities

Article References: AYA National Standards for Cancer Survivorship Care Consortium, Betts, A. C., Baker, K. S., Blaes, A. H., Devine, K. A., Hahn, E. E., Miller, K. A., Parsons, H. M., & Yi, J. C. (2026). Understanding and advancing alignment of the national standards for cancer survivorship care for adolescents and young adults: challenges and opportunities. Journal of Cancer Survivorship. https://doi.org/10.1007/s11764-026-02128-9

Image Credits: AI Generated

DOI: 10.1007/s11764-026-02128-9

Keywords: cancer survivorship, adolescent and young adult cancer, AYA oncology, National Standards for Cancer Survivorship Care, electronic health records, survivorship care delivery, health services research, patient-reported outcomes, fertility preservation, health insurance, care coordination, NCI-designated cancer centers