The research team, led by Shirley M. Bluethmann of Wake Forest University School of Medicine and Atrium Health Wake Forest Baptist Comprehensive Cancer Center, used a qualitatively dominant convergent mixed-methods design to assess perceived alignment with the National Standards across a health system whose catchment area spans urban and rural parts of North and South Carolina as well as parts of Georgia and Virginia. Quantitative data came from an electronic survey distributed through REDCap to 51 key informants representing oncology practices within the system, including clinical champions and team leaders. In parallel, the team gathered rich qualitative data from four representative practices, two large main-campus oncology practices and two smaller regional ones, through four clinic observations and twelve semi-structured interviews. The qualitative work was guided by the Consolidated Framework for Implementation Research, or CFIR, a widely used lens for understanding what helps or hinders the adoption of new practices in healthcare settings.

The survey instrument was adapted from the Organizational Assessment Tool in the NCI National Standards for Cancer Survivorship Care Toolkit, with refinements informed by a Survivorship Insights Council that included project champions, community outreach leaders, supportive oncology researchers, healthcare providers, and a cancer patient advocate. The survey posed ten questions each in three domains: Health System Policy, covering the organizational policies that establish and structure survivorship care; Health System Processes, covering how that care is actually delivered; and Health System Evaluation, covering how systems collect data on the effects of survivorship care. The team added nuanced response options, such as distinguishing between processes performed routinely and those performed only sometimes, and follow-up questions on practical and social effects of cancer and referral pathways for caregivers.

The response numbers tell their own story about the burden of competing demands in clinical settings. Of the 51 informants contacted, 16 consented and only 10 completed at least one survey item. Those who did respond represented practices seeing anywhere from 217 to 6,459 new cancer patients annually, with patient populations ranging from nearly entirely urban to almost entirely rural, and from 3.4 percent to 36.4 percent Black patients. On average, informants reported meeting 55.4 percent of the National Standards at least some of the time. The strongest performance came in the Health System Processes domain, where 91 percent of respondents said standards were met at least sometimes. By contrast, the policy and evaluation domains showed striking gaps: 88 percent of informants reported having no policy for collecting longitudinal data on survivors’ experiences and patient-reported outcomes, and no informant reported having a process to collect data on survivors’ return to work or other productive activities. Fully 86 percent said they had no process for tracking how many health professionals at their practice were trained to provide survivorship care.

The qualitative strand of the study filled in the texture behind those numbers. Clinic observations, rooted in focused ethnography principles, ranged from roughly four to six hours per site and included staff huddles, informal conversations, and observation of patient visits lasting from about thirty minutes to an hour. Interviews averaged 27.5 minutes and captured administrators, nurse managers, social workers, program managers, and advanced practice providers. Most partners had little to no familiarity with the National Standards outside the context of the study itself, yet they shared largely positive perceptions of what the standards could accomplish, viewing them as beneficial for improving and standardizing care across the system.

Across the CFIR domains, a consistent set of facilitators and barriers emerged. Within Intervention Characteristics, partners found the National Standards difficult to understand, describing them as too vague in some places and too broad in others, and questioning why policy and process were separated when the distinction was hard to operationalize. One partner noted that patients do not exist in an oncology vacuum, pointing out that the standards do not accommodate social needs assessment that already happens in primary care, such as screening for food insecurity or safety at home. Within the Outer Setting, partners described transportation challenges, food insecurity, financial strain, inadequate housing, and limited health literacy among their patients, all of which contribute to missed or delayed appointments. Rural patients often cannot do virtual visits from home because of poor internet or cellular connectivity, and many are reluctant to travel to the main campus at all. Partners also argued that the National Standards would be nearly impossible to prioritize without linkage to incentives or accreditation requirements, pointing to the American College of Surgeons Commission on Cancer as the most plausible lever for driving adoption.

The Inner Setting domain exposed perhaps the most consequential disparities. Access to survivorship care and supportive oncology services was markedly more extensive at main-campus locations than at regional practices, where survivorship visits might be limited to once per week or less and supportive services were offered in person only on a limited basis or via telehealth. One regional partner described patients as getting the bare minimum when it came to survivorship, with follow-up visits focused narrowly on the treated organ rather than on broader preventive needs like colonoscopies and lung screenings. Crucially, partners emphasized that the problem was often not a lack of resources but a lack of knowledge about what resources exist elsewhere in the system. They called for more navigators, social workers, and mental health counselors, better tracking of survivorship care, improved health-related social needs screening, and more training for staff on what survivorship care involves. One partner suggested an electronic medical record template that would give patients information about the purpose of a survivorship visit before they arrive, so the visit is understood as more than a box being checked.

The Process domain highlighted who needs to be at the table. Partners identified clinicians responsible for identifying and referring patients, along with administrators and leaders with authority over hiring, as essential to implementation. One interviewee noted that providers would support expanded supportive oncology, but that administration would need to budget the full-time positions needed to staff regional sites. The mixed-methods integration, presented as a joint display, showed that while partners generally believed they were meeting survivorship care standards and addressing survivors’ needs, implementation was inconsistent, with barriers including unclear policy language, limited resources and staffing, time constraints, and gaps in communication and education, particularly in regional settings.

The authors are candid about the study’s limitations. The low survey response rate raises the likelihood of response bias, since informants who chose to respond may have been more engaged in survivorship care than those who did not, meaning the reported alignment figures may overstate the true picture. The team suggests that future efforts could simplify the standards, improve timing around competing clinical demands, and secure stronger leadership communication about the survey’s importance. They also point toward more objective assessments using electronic health record data, and toward asking explicitly about the feasibility of addressing each identified barrier.

Still, the study’s implications reach well beyond one health system. It demonstrates a systematic, replicable approach for assessing alignment with the National Standards and for surfacing the contextual factors that determine whether national guidance translates into bedside reality. The authors conclude that a model combining standardized survivorship services with the flexibility to meet local population needs may help close gaps in care, promote equitable access to supportive resources, and improve outcomes for the growing population of cancer survivors across diverse settings. As the silver tsunami of aging survivors swells, the study is a reminder that standards on paper only matter as much as the staffing, infrastructure, incentives, and local knowledge that carry them into practice.

Subject of Research: Assessment of health system alignment with National Standards for Cancer Survivorship Care in the American Southeast

Article Title: Contextual assessment of perceived health system alignment with National Standards for Cancer Survivorship Care in the American Southeast

Article References: Bluethmann, S. M., Bunch, S., Nightingale, C., Willis, A. R., York, B., Fisher, B., Birken, S. A., Zimmer, R., Strom, C., Strahley, A., Zakrzewski, S., & Sohl, S. J. (2026). Contextual assessment of perceived health system alignment with National Standards for Cancer Survivorship Care in the American Southeast. Journal of Cancer Survivorship. https://doi.org/10.1007/s11764-026-02123-0

Image Credits: AI Generated

DOI: 10.1007/s11764-026-02123-0

Keywords: cancer survivorship, National Standards, health system alignment, implementation science, CFIR, supportive oncology, rural health disparities, mixed methods, Commission on Cancer, patient-reported outcomes, health-related social needs, care delivery

The stakes of this gap are considerable. By 2040, an estimated 26 million people in the United States will be living with a history of cancer, and roughly 55 percent of them are expected to rely on unpaid family members or friends for medical, instrumental, and psychosocial support. Caregivers attend appointments, manage complex medication schedules, monitor treatment side effects at home, provide transportation, and absorb the emotional fallout of a cancer diagnosis, often for years at a time. Previous research cited in the study estimates that about 42 percent of cancer caregivers experience depression, 46 percent experience anxiety, and a quarter face financial strain, underscoring that caregiving is not merely a supporting role but a demanding health exposure in its own right.

The National Standards for Cancer Survivorship Care were designed in part to change this picture. They require that health systems have a process to collect data on caregivers’ experiences and unmet needs, formally recognizing caregivers as part of the care team. But the standards do not specify which experiences should be assessed or how, and until now there has been little evidence about whether the standard is being met in practice. The new study, led by Abigayle R. Feather, Marguerite A. Webster, Jessica L. Burris, and Laurie E. McLouth of the University of Kentucky Markey Cancer Center, set out to measure that gap directly, asking caregivers themselves how often their concerns were raised, heard, and addressed.

The research team conducted a cross-sectional, convergent mixed-methods study at an NCI-Designated Comprehensive Cancer Center. Seventy-seven caregivers of survivors with solid tumors completed a survey; participants were recruited from breast, gynecologic, head and neck, and multidisciplinary outpatient clinics, with survivors either at least three months into active treatment or attending post-treatment survivorship care. The investigators purposively sampled to obtain relatively even distributions across treatment phase and disease stage. Caregivers ranged in age from 24 to 84, with a mean of about 55 years; roughly 65 percent were female, 96 percent were non-Hispanic White, and nearly 60 percent lived in rural areas, defined using the 2023 USDA Rural-Urban Continuum Codes. Most were spouses or adult children of the survivor, and on average they reported providing nearly 36 hours of care per week.

The survey instrument was deliberately structured to mirror the survivor assessment domains in the national standards, supplemented with caregiving-specific concerns from prior research. Caregivers were asked how often, since diagnosis, the cancer treatment team had asked about emotional strain, physical problems, social concerns, and challenges in providing medical and non-medical care, using items adapted from the Patient Centered Survivorship Index. They also completed the Caregiver Roles and Responsibilities Scale, a validated measure spanning support, lifestyle, emotional health, self-care, and financial well-being. Eight caregivers then completed semi-structured interviews, which were analyzed using directed content analysis anchored to the national standards, with initial coding agreement exceeding 80 percent.

The quantitative results were stark. Emotional concerns were the most commonly reported, at 66 percent, followed by physical concerns at 32 percent and caregiving-specific medical and non-medical task concerns at about 22 percent. Yet across every domain, at least half of caregivers said the care team had never asked about the relevant issue. Among those who did experience a concern, 14 percent or fewer said they had raised it with the care team, and fewer than 6 percent of those with physical, social, or non-medical caregiving concerns reported communicating them at all. The interview data corroborated the survey: caregivers described being asked about the survivor’s needs frequently, but their own needs were assessed rarely, if ever, with supportive care information often delivered as printed material early in treatment that required caregivers to follow up on their own initiative.

Subgroup comparisons revealed few statistically significant differences, but one pattern stood out clearly. Rural caregivers were significantly less likely than non-rural caregivers to report that the care team asked at least half the time about their social concerns, 8.7 percent versus 23.3 percent, and about medical caregiving-related concerns, 19.6 percent versus 30 percent. The authors suggest that care teams may default to discussing logistical barriers such as transportation with rural families while overlooking emotional and medical caregiving needs, or that rural caregivers’ well-documented barriers to disclosure, including stigma around seeking help and cultural values of self-reliance, may suppress conversations. With more than 20 percent of U.S. cancer caregivers living in rural areas, and evidence that rural caregivers often have more unmet needs than their care recipients, the authors argue that systematic assessment could help level this inequity.

The interviews also mapped the practical terrain caregivers navigate. Barriers inside the health system included physically navigating sprawling hospital campuses and parking, coordinating care across multiple specialists, and communication lapses that left caregivers feeling their concerns were not fully appreciated. Outside the system, distance from the cancer center, transportation, financial limitations, insurance challenges, difficulty taking family leave, and poor coordination between the cancer center and local clinics all impeded access to support. Facilitators included approachable providers, effective interdisciplinary coordination, supportive care services integrated into treatment, insurance coverage, charitable assistance, and local availability of certain services. Caregivers offered concrete recommendations: more personalized information delivery, including videos on topics such as post-surgical care, proactive outreach with relevant resources, caregiver support groups, and tangible help such as meal coupons for families spending long days at the hospital.

The authors are candid about the study’s limitations. The sample was predominantly White, educated, and relatively affluent, so findings may not generalize to caregivers with fewer socioeconomic resources who face additional barriers. The single-site design, self-reported measures subject to recall and social desirability bias, and a small qualitative sample of eight interviews all constrain interpretation. The study also relied on caregiver reports rather than auditing formal health system processes, and because the national standards do not prescribe specific caregiver assessment procedures, the findings should be read as informing potential approaches rather than evaluating fidelity to a mandated model. Still, as one of the first studies to assess alignment with the new standards from the caregiver perspective, it offers a template for how systems might begin collecting the data the standards require.

The implications reach beyond any single institution. The authors argue that cancer care should implement routine, comprehensive, structured assessment of caregiver concerns paralleling survivor assessment, paired with standardized referral pathways to on-site and local services, education about those services, and navigation support to reduce barriers to use. Existing care delivery initiatives, including distress screening and tobacco screening, may offer adaptable frameworks, and implementation science approaches such as the Fit-to-Context Framework and co-creation with multilevel partners could help ensure procedures are feasible and sustainable. Until caregiver burden is recognized in diagnostic and billing codes, reimbursement barriers will continue to limit access to services, making policy change essential. The deeper shift the study calls for is conceptual: reframing the survivor and caregiver together as the unit of care in oncology, so that the people doing much of the work of cancer care are no longer invisible to the system that depends on them.

Subject of Research: Caregiver experiences and unmet needs in cancer survivorship care relative to the National Standards for Cancer Survivorship Care

Article Title: The national standards for cancer survivorship care in action: caregiver experiences across stage, phase, and geography

Article References: Feather, A. R., Webster, M. A., Stanek, M. L., Andreae, L. J., Back-Haddix, S., Blair, C., Burris, J. L., & McLouth, L. E. (2026). The national standards for cancer survivorship care in action: caregiver experiences across stage, phase, and geography. Journal of Cancer Survivorship. https://doi.org/10.1007/s11764-026-02124-z

Image Credits: AI Generated

DOI: 10.1007/s11764-026-02124-z

Keywords: cancer caregivers, cancer survivorship, National Standards for Cancer Survivorship Care, caregiver burden, unmet needs, rural health disparities, supportive care, distress screening, mixed methods, care delivery, quality of life, health system assessment