The research, conducted by Jean C. Yi, Sheri Ballard, Emily Jo Artim, Casey Walsh, and K. Scott Baker at Fred Hutchinson Cancer Center, took a mixed methods approach, combining hard utilization data from the electronic health record with in-depth qualitative interviews. All participants were one to five years past the end of cancer treatment, a window when survivorship care is considered especially critical. The team queried the electronic health record to determine which survivors had been seen in the Survivorship Clinic, then conducted qualitative interviews with a randomly selected subset of participants drawn from a larger parent study testing a digital health intervention. That parent trial, known as INSPIRE—the INteractive survivorship program to improve health care REsources—is designed to test a digital intervention with stepped care telehealth to improve outcomes for adolescent and young adult survivors.

The demographic profile of the small group that did use the clinic was telling. Among the 38 clinic users, 86.8 percent were female, 71.1 percent were White, 86.8 percent were not Hispanic, and 65.7 percent had been treated for breast cancer. This skew toward female, White, and breast cancer populations raises questions about equitable reach, though the study’s primary focus was on understanding why utilization was so low across the board. The picture that emerged from the electronic health record was unambiguous: survivorship services, even when available at the very institution where these patients had been treated, were being used by fewer than one survivor in twenty.

To understand the reasons behind those numbers, the researchers screened a subset of 147 participants enrolled in the parent trial for approach to qualitative interviews, ultimately completing forty interviews. The interviewees had a mean age of 38.4 years, with half having had breast cancer; 78 percent were female, 83 percent were White, and 92 percent had attained a college degree or higher education. Despite being well educated and demographically similar to the clinic-using group, only one of the forty interview participants had ever visited the Survivorship Clinic. That single data point may be the most arresting in the study: even among survivors engaged enough to enroll in a survivorship research trial, virtually none had accessed the clinic down the hall.

Through content analysis of the interview transcripts, the researchers identified a set of barriers that fell into distinct but interconnected categories. The most significant was simple lack of awareness: many survivors simply did not know the survivorship clinic existed or what services it offered. This was compounded by avoidance—a psychological reluctance to confront cancer again after treatment had ended—and by lack of time, as young adults juggle careers, education, caregiving responsibilities, and the reestablishment of normal life. For a population at the busiest and most transitional stage of adulthood, an additional medical appointment that they had never heard of and did not fully understand carried little apparent urgency.

The interviews also illuminated what would have made a difference. Participants identified referrals from their oncology care teams, concrete information about the services the clinic provides, and the availability of telehealth as factors that would have facilitated them seeking survivorship care. In other words, the barriers were not primarily about motivation or health literacy alone; they were structural and communicative. Survivors needed a trusted clinician to tell them, at the end of treatment, that a survivorship clinic exists and why it matters. They needed to know what would happen during a visit—what late effects would be screened, what symptoms could be addressed, what psychosocial support was available. And they needed flexible access options compatible with the realities of young adult life, including remote participation.

The study arrives at a moment when survivorship care is being formalized at the national level. The National Standards for Cancer Survivorship Care propose health system policies to develop survivorship programs, and the National Comprehensive Cancer Network’s survivorship guidelines, updated in 2025, call for structured follow-up care including survivorship care plans. Yet this research shows that the existence of a clinic, even within a comprehensive cancer center, does not guarantee uptake. Prior work has documented low attendance among childhood cancer survivors and among Hodgkin lymphoma survivors, and studies of rural childhood cancer survivors have similarly pointed to awareness and access as limiting factors. The new study extends that evidence into the adolescent and young adult population, which is demographically and clinically distinct from both pediatric and older adult populations.

That distinctiveness is part of why the gap matters so much. Adolescents and young adults diagnosed with cancer face decades of life after cure, during which late effects—cardiac dysfunction, secondary malignancies, infertility, endocrine problems, cognitive changes, and psychosocial distress—may emerge and progress. Research has consistently shown that this age group experiences unique biology and unique psychosocial burdens, and that their survival gains have historically lagged behind those of children and older adults. Survivorship clinics are designed to catch these late effects early, coordinate surveillance, and connect survivors with interventions. When fewer than five percent of eligible survivors walk through the clinic door, the potential of that model goes largely unrealized, and preventable morbidity may accumulate silently for years.

The implications drawn by the authors are pointed. Lack of awareness of the survivorship clinic was the most significant barrier, and a referral from their oncology care team would have facilitated them scheduling a visit. This suggests a relatively low-cost, high-impact intervention: embedding an explicit survivorship referral into the standard end-of-treatment workflow, paired with clear patient-facing information about what the clinic offers and telehealth options to reduce logistical friction. The study’s connection to the INSPIRE digital health trial also hints at a broader strategy—meeting young survivors where they already are, on their phones, rather than waiting for them to find a clinic they have never heard of. As health systems implement national survivorship standards, the lesson of this study is that building clinics is only half the task; the other half is making sure the patients who need them know they exist.

For survivors themselves, the message is equally practical: late effects are real, monitoring is worthwhile, and help is available beyond the end of treatment. For oncology teams, the message is that the handoff from active treatment to survivorship care cannot be left to chance. A single sentence from a trusted oncologist—a referral, an explanation, an invitation—may be the difference between a young survivor who falls through the cracks and one who receives the long-term surveillance that modern cancer care promises. With 4.5 percent utilization as the baseline, there is enormous room for improvement, and this study offers a clear, evidence-based map of where to begin.

Subject of Research: Utilization of survivorship clinics by adolescent and young adult cancer survivors

Article Title: A mixed methods study of adolescent and young adult cancer survivors and their utilization of a survivorship clinic: Barriers and facilitators

Article References: Yi, J. C., Ballard, S., Artim, E. J., Walsh, C., & Baker, K. S. (2026). A mixed methods study of adolescent and young adult cancer survivors and their utilization of a survivorship clinic: Barriers and facilitators. Journal of Cancer Survivorship. https://doi.org/10.1007/s11764-026-02125-y

Image Credits: AI Generated

DOI: 10.1007/s11764-026-02125-y

Keywords: adolescent and young adult oncology, cancer survivorship, survivorship clinic, late effects, mixed methods, qualitative interviews, telehealth, health care utilization, barriers and facilitators, cancer survivorship care standards, Fred Hutchinson Cancer Center, digital health intervention

A major new effort is underway to change that. In a special section of the Journal of Cancer Survivorship, researchers led by Kimberly A. Miller of the University of Southern California, Vida A. Passero of the VA National TeleOncology program and the University of Pittsburgh, and Michelle A. Mollica of the Medical University of South Carolina present an overview of the National Standards for Cancer Survivorship Care, early lessons from their real-world testing, and a roadmap for what must come next. The standards, developed by the National Cancer Institute in partnership with the Department of Veterans Affairs and several Health and Human Services agencies as part of the Biden Cancer Moonshot and Cancer Cabinet initiatives, are designed as recommendations for health systems rather than mandates for individual clinicians. Together they form a nationally relevant blueprint of essential health policies, care delivery processes, and evaluation indicators intended to guide the creation and strengthening of survivorship programs across wildly different care settings.

The development process was deliberately structured and consensus-driven. Drawing on methods used to build the Victorian Quality Cancer Survivorship Framework in Australia, the team began with a comprehensive landscape review of survivorship and cancer-specific clinical guidelines, the Commission on Cancer survivorship standard, existing quality frameworks, state cancer control plans, and the peer-reviewed literature. NCI and the VA then convened three iterative virtual meetings with national and international survivorship experts to prioritize candidate indicators by importance and feasibility. The result was a final set of 30 indicators organized across three domains—health system policies, care delivery processes, and assessment and evaluation—with 10 indicators in each. The architecture is intentionally practical: it asks health systems to examine what they promise survivors, how they actually deliver care, and how they measure whether that care works.

Knowing whether a blueprint survives contact with reality required testing it in the field. In 2024, NCI released an administrative supplement funding opportunity inviting current grantees to examine or improve survivorship care in alignment with the new standards. Eighteen demonstration projects were funded across the United States, spanning NCI-designated comprehensive cancer centers, children’s hospitals, integrated health systems, and community oncology programs. The portfolio covered the full implementation continuum, from readiness assessment and mapping of existing services to strategic planning, program implementation, and evaluation of care quality and outcomes. It also reached a striking diversity of survivor populations, including pediatric and adolescent and young adult survivors, older adults, rural communities, underserved groups, and survivors of specific cancer types, underscoring both the breadth of survivorship needs and the adaptability of the standards across contexts.

The early findings are sobering in places and encouraging in others. One study evaluating a large regional health system in the American Southeast found that practices met only about half of the indicators on average, revealing multilevel barriers and facilitators that will shape any national rollout. A team at a rural comprehensive cancer center characterized patient experiences with digital survivorship services, suggesting that telehealth and portal-based programming can meaningfully extend the reach of survivorship care to patients who might otherwise never access it. Researchers analyzing electronic health record data for head and neck cancer patients in their first year after diagnosis identified persistent gaps between what the standards call for and what clinical practice delivers, particularly when comparing rural and urban locations. Survivor-reported evaluations at a comprehensive cancer center found stronger alignment on physical and emotional concerns than on financial and practical needs, pointing to financial navigation as a critical weak link in the survivorship experience.

Several projects zeroed in on populations whose needs standard models often miss. The Adolescent and Young Adult National Standards Consortium drew on insights from nine healthcare systems to map the challenges of aligning AYA survivorship care with the new framework, while a mixed-methods study of an AYA survivorship clinic documented strikingly low utilization and identified limited awareness and weak referral patterns as key barriers. Caregivers emerged as another underserved group: one study found substantial unmet emotional, social, and health needs among cancer caregivers that must be addressed if standards covering their care are to be met. Meanwhile, a new Cancer Survivorship Maturity Model offers institutions a structured way to stage their readiness across survivorship domains, revealing heterogeneous maturity even among engaged organizations and providing a practical path for implementation planning.

Across all 18 projects, several cross-cutting themes crystallized. Organizational readiness consistently proved to be the foundational determinant of implementation. Health systems with existing survivorship leadership, defined roles, and dedicated infrastructure were far better positioned to engage in strategic planning, pilot testing, and measurement, while settings with limited staffing or fragmented accountability often had to focus first on readiness assessment and capacity building. In one multi-site health system, main campuses with dedicated survivorship infrastructure met more standards, whereas regional clinics with constrained staffing and time delivered what researchers described as only a bare minimum of survivorship care. The standards, in other words, function not just as a quality framework but as a diagnostic tool that exposes variation in institutional preparedness and highlights where foundational investment is most needed.

A second theme was definitional variability. Projects differed in who they counted as survivors, when survivorship care should begin, and what services fell under the survivorship umbrella—whether post-treatment specialty visits alone or care from diagnosis through advanced disease spanning oncology and primary care. This heterogeneity complicated standardization, particularly for adolescents and young adults, people living with metastatic disease, and patients whose care crosses multiple settings, but it also demonstrated the flexibility of the standards to accommodate diverse models of care. A third theme involved the hard technical work of workflow integration. Translating standards into referrals, assessments, documentation, and follow-up required alignment with existing clinical roles and data systems, and teams repeatedly ran into limited structured data, uneven electronic health record functionality, and reliance on manual processes. Innovative responses included maturity models to stage infrastructure, standardized EHR templates for symptom and distress screening, and embedded telehealth and digital navigation that extended survivorship processes beyond in-person visits.

The practical lessons emerging from this early implementation are clear at every level of the system. At the systems level, improving alignment is tightly linked to leadership engagement, clear ownership, and dedicated survivorship infrastructure, while the absence of structured EHR data to capture survivorship indicators forced many sites into manual workarounds—evidence that sustainable implementation requires coordinated investments in leadership, governance, and data infrastructure. At the clinical level, survivorship care proved most feasible when woven into existing oncology and primary care workflows through structured care pathways, standardized assessments, and formalized referral processes, though gaps in psychosocial, financial, and supportive care needs persist. At the patient level, survivors continue to report unmet needs in symptom management, psychosocial support, financial burden, and care coordination, and barriers such as limited awareness, access challenges, and navigation complexity continue to limit the reach of even well-designed programs. The consistent message is that standardized frameworks must be paired with population-specific adaptation for adolescents and young adults, rural survivors, caregivers, and other groups whose needs do not fit a single template.

The authors frame the standards as a foundation for a more consistent, equitable, and accountable national approach to survivorship care, and they lay out distinct agendas for research, practice, and policy. Future research should identify which of the 30 indicators are most sensitive to change, refine measurement strategies, and apply implementation science methods to understand how organizational context shapes uptake and sustainability. Health systems seeking to scale survivorship services will need to invest in leadership engagement, workforce training, data infrastructure, and cross-disciplinary coordination, embedding the standards into team-based care and EHR optimization. On the policy front, harmonizing the standards with existing accreditation requirements such as the Commission on Cancer’s Survivorship Standard 4.8, quality reporting initiatives, and payer priorities could accelerate adoption and reduce fragmentation, particularly for underserved populations and resource-limited settings. What began as a conceptual blueprint is now being stress-tested in real-world settings, and the early evidence suggests that with sustained partnership among health systems, researchers, clinicians, survivors, caregivers, and policymakers, the national standards could transform survivorship from a set of discrete, unevenly distributed services into a coordinated, system-level function of American cancer care.

Subject of Research: Development and early implementation of the National Standards for Cancer Survivorship Care in United States health systems

Article Title: Advancing the national standards for cancer survivorship care: overview, early implementation insights, and future directions

Article References: Miller, K. A., Passero, V. A., & Mollica, M. A. (2026). Advancing the national standards for cancer survivorship care: overview, early implementation insights, and future directions. Journal of Cancer Survivorship. https://doi.org/10.1007/s11764-026-02122-1

Image Credits: AI Generated

DOI: 10.1007/s11764-026-02122-1

Keywords: cancer survivorship, National Cancer Institute, health care standards, care coordination, survivorship care quality, implementation science, electronic health records, adolescent and young adult survivors, telehealth, health policy, psychosocial support, health systems