Head and Neck Cancer Survivors Get Specialist Care, but Records Miss the Rest

Every year in the United States, roughly 72,770 people are diagnosed with cancers of the mouth, throat, voice box, and other structures of the upper aerodigestive tract, and about 17,110 die from the disease. Thanks to advances in surgery, radiation, and chemotherapy, between 63 and 70 percent of these patients now survive at least five years, bringing the national population of head and neck cancer survivors to more than half a million people. Survival, however, comes at a price. Because tobacco and alcohol are leading causes of these tumors, many patients arrive at diagnosis already burdened with heart disease, diabetes, or chronic lung disease, and up to 83 percent develop a new comorbidity within five years. A new study published in the Journal of Cancer Survivorship takes an unusually honest look at whether the health system is keeping up with this wave of long-term need, and its findings reveal a striking gap between what clinicians believe they deliver and what the medical record actually shows.

The research, led by Janet H. Van Cleave of UTHealth Houston Cizik School of Nursing together with colleagues across several institutions, examined survivorship care for head and neck cancer patients at a large academic health system in Southeast Texas. The system serves a thirteen-county catchment area that includes rural, suburban, and urban populations across fourteen academic and community hospitals, making it an ideal natural laboratory for asking whether geography shapes access to follow-up care. The team used two complementary methods. First, they surveyed fifteen clinicians and health system administrators involved in head and neck cancer care, asking them to rate how well their institution’s services matched the newly released National Standards for Cancer Survivorship Care. Second, they mined the electronic health records of 438 patients diagnosed between January 2022 and June 2024, counting every documented encounter in the first year after diagnosis.

The National Standards for Cancer Survivorship Care, developed in 2024 by the National Cancer Institute in partnership with the Department of Veterans Affairs and other federal agencies, organize survivorship care into three categories: policies, which define an organization’s capacity and structure; processes, which describe its ability to deliver care through embedded practices; and assessments, which measure the impact of that care. The survey asked participants to rate each standard on a four-point scale from not present to highly present, and the researchers converted these ratings into modified kappa scores, a statistical measure of agreement that corrects for chance. The results were revealing. Processes scored a respectable 0.60, indicating that clinicians perceived the system’s day-to-day delivery of survivorship services as reasonably well aligned with national expectations. Policies and assessments, by contrast, scored only 0.28 and 0.29 respectively, suggesting that the formal scaffolding needed to sustain and measure that care is far weaker.

Within those averages, individual standards told a more nuanced story. The highest-rated item, with a modified kappa of 0.93, was the assessment of risk for recurrence or new cancers, including family history and genetic testing with appropriate surveillance recommendations. Access to specialty services for managing late effects such as cardiovascular problems scored 0.87, and referrals to supportive services including nutrition, rehabilitation, and dental care scored 0.72. At the opposite extreme, the lowest-rated standard, a mere 0.07, was the collection of longitudinal data on survivors’ experiences and patient-reported outcomes. In other words, the institution excels at spotting cancer recurrence risk and connecting patients to specialists, but it has almost no systematic mechanism for learning whether its survivorship care actually works from the patient’s point of view.

The electronic health record analysis painted a different and partly contradictory picture. Across the 438 patients, who had a mean age of 64.5 years and were mostly male, White, and non-Hispanic, the researchers documented 4,233 encounters in the first year after diagnosis. Head and neck oncology care, meaning visits with surgeons, radiation oncologists, and medical oncologists, dominated with 76.5 percent of all encounters. The remaining quarter of care was concentrated almost entirely in two categories: specialist services, which accounted for 14.3 percent of encounters, and rehabilitation, which accounted for 6.0 percent. At the patient level, 38.8 percent had at least one specialist visit and 31.5 percent had at least one rehabilitation encounter. Strikingly, several services that are considered central to comprehensive head and neck cancer survivorship, including nutrition support, were completely undocumented in the record.

How can clinicians perceive a broad network of survivorship services while the data show only a narrow slice? The authors offer a compelling technical explanation. Electronic health records are built primarily for clinical care and billing, not for measuring the full spectrum of supportive services. A lymphedema assessment may be performed during a rehabilitation visit without ever appearing as a separate structured service category. Nutrition support may be delivered through patient education materials on websites or printed literature in waiting rooms, activities that generate no billable encounter and therefore leave no trace in the structured data. Clinicians, whose daily work involves actually delivering this care, may have a more complete picture of what patients receive than any database can capture. The discrepancy is not necessarily evidence of missing care; it is evidence that the measurement infrastructure is blind to much of what happens.

One of the most anticipated findings concerned geography. Prior research has suggested that rural patients face barriers to head and neck cancer care, since specialized surgery is concentrated in high-volume cancer centers that may require long travel. Yet in this study, residence in rural, suburban, or urban areas showed no association with the number of documented encounters. The cohort was well distributed geographically, with 36.5 percent urban, 28.8 percent suburban, and 33.8 percent rural residents, and a quarter living in areas with poverty rates of 20 percent or higher. The authors note that some studies have described a paradox of travel time, in which patients who travel farther to reach high-volume centers actually experience better outcomes, possibly because those who make the journey are a selected group. Disentangling whether encounter counts truly capture access, or whether geocoded travel distance tells a different story, remains an open question for future research.

What did predict how much care patients received? Comorbidity burden was the most consistent correlate. Each additional Charlson comorbidity was associated with a 13.0 percent higher rate of total encounters, a 9.1 percent higher rate of head and neck oncology visits, and a striking 46.4 percent higher rate of specialist encounters. Patients with more chronic disease generate more follow-up, which is clinically sensible but also hints that sicker survivors absorb a disproportionate share of limited survivorship resources. Rehabilitation encounters were the exception, showing no association with comorbidity count, and patients with laryngeal cancer trended toward fewer rehabilitation visits than those with oropharyngeal tumors. The authors caution that these observational findings should not be read causally, but they underscore how clinical complexity drives utilization patterns across the survivorship period.

The study’s limitations are worth noting. It was conducted at a single academic health system with an unusually integrated rehabilitation service, which may have inflated rehabilitation counts and limits generalizability. Care received outside the system was invisible, the quality of documented encounters could not be assessed, and structured coding may undercount services that were actually delivered. Still, the strengths are substantial: pairing provider perceptions with record-based utilization data offers a rare dual view of how survivorship standards are perceived, documented, and measured in a real system serving rural and urban populations alike. The authors point toward promising solutions, including natural language processing and large language model-assisted review of unstructured notes to detect care that structured fields miss, automated referral pathways, and digital symptom monitoring that could extend survivorship services into patients’ homes regardless of ZIP code.

The broader message resonates far beyond Southeast Texas. Head and neck cancer survivors face a formidable array of late effects, from dry mouth, swallowing difficulty, and pain to fatigue, lymphedema, dental problems, sleep disturbance, and emotional distress, and roughly a third experience emergency department visits or hospitalizations in their first year after diagnosis. The new national standards offer a blueprint, but this study shows that turning a blueprint into measurable, equitable care requires more than good intentions from clinicians. It requires policies that mandate documentation, assessments that capture patient-reported outcomes, and informatics infrastructure designed to see the full breadth of survivorship care rather than only its billable fragments. For the more than half a million Americans living after head and neck cancer, closing that visibility gap may be one of the most consequential steps the cancer care system can take.

Subject of Research: Alignment of head and neck cancer survivorship care with national survivorship standards across rural and urban patient populations

Article Title: Cancer survivorship care among head and neck cancer patients living in rural and urban locations

Article References: Van Cleave, J. H., Fortes, I. S. H., Rodriguez, J. A., Araya, A., Karni, R. J., Gutiérrez, C., Fenton, S. H., Schulman-Green, D., Myneni, S., Gong, Y., Jain, K. S., & Egleston, B. L. (2026). Cancer survivorship care among head and neck cancer patients living in rural and urban locations. Journal of Cancer Survivorship. https://doi.org/10.1007/s11764-026-02129-8

Image Credits: AI Generated

DOI: 10.1007/s11764-026-02129-8

Keywords: head and neck cancer, cancer survivorship, survivorship care standards, electronic health records, rural health, health services research, rehabilitation, comorbidity, health disparities, patient-reported outcomes, cancer care delivery, informatics