Surviving cancer, still suffering: Survey reveals gaps in follow‑up care

(Press-News.org) Over 70% said mental health was not addressed during treatment Less than a third had information about survivorship care Northwestern oncologists are launching new survivorship clinic based on findings Findings apply broadly to survivors of many cancers CHICAGO --- More Americans are beating cancer than ever, yet many still grapple with treatment’s long shadow — especially on their mental health.

A new Northwestern Medicine study found most head-and-neck cancer survivors who underwent radiation don’t know about “survivorship care,” even as many grapple with side effects such as lingering dry mouth, swallowing problems and psychological distress.

Standard follow‑ups typically focus on cancer surveillance, yet longer‑living survivors may also increasingly need chronic disease management, preventive care and psychosocial support. To pinpoint those needs, Northwestern scientists surveyed 317 head‑and‑neck cancer survivors treated with radiation and other therapies from 2013 to 2023.

More than 70% said mental health concerns were not addressed during treatment and only 28% had access to information on how to access survivorship care. Most respondents were within two years of finishing therapy, and roughly 15% screened positive for current depression based on their responses.

The survey also found that 40% of survivors still struggle with dry mouth, and nearly a quarter reported trouble swallowing, altered taste and dental issues.

The study will be published on Wednesday, April 30, in the journal Supportive Care in Cancer.

“People are living longer after cancer, which is wonderful,” said senior author Dr. Laila Gharzai, assistant professor of radiation oncology at Northwestern University Feinberg School of Medicine and a Northwestern Medicine physician.

“But throughout the U.S., comprehensive survivorship is rarely offered or even discussed. Our patients with head-and-neck cancers who underwent radiation told us what’s missing for them. Now we can build programs that truly fit their needs.”

These programs, Gharzai said, should be grounded in the Cancer Survivorship Framework, a novel approach that addresses five key areas: physical effects, psychosocial health, cancer screening, chronic‑disease management and health promotion.

“That approach can extend beyond head‑and‑neck cancer to any cancer where survivors live with lasting effects,” Gharzai said.

Patient-centric solutions

When it came to asking patients how they would like their survivorship clinic framed, almost half preferred one longer clinic visit every 6 to 12 months to cover everything at once versus shorter, more frequent visits. Women and patients who had finished treatment more recently were especially likely to want this kind of care.

“Comprehensive survivorship care can’t fit into short, regular visits,” said study first author Alexis Larson, a Northwestern Medicine certified nurse practitioner. “It takes a team — oncologists, dietitians, counselors and social workers — to give survivors the full support they deserve.”

The findings underscore a pressing need as the survivor population keeps growing. In 2022, there were 18.1 million cancer survivors in the U.S. —  about 5.4 percent of the population, according to the Journal of the National Cancer Institute. Advances in detection and treatment, and an aging population, are expected to push that number to 26 million by 2040.

Next steps

Gharzai’s team is turning the study’s insights into action. They are building a personalized survivorship clinic inside Northwestern Memorial Hospital’s Department of Radiation Oncology, starting with head-and-neck cancer, structured around all five domains of the Cancer Survivorship Framework.

Because mental‑health needs surfaced as the biggest gap, the team is also building a pilot study testing the integration of a validated cognitive behavioral therapy training program to help patients manage pain, anxiety and depression during and after radiation.

The new service will complement the broader survivorship clinics already offered through the Robert H. Lurie Comprehensive Cancer Center of Northwestern University, but places comprehensive follow‑up directly in the setting where many patients received their treatment.

This study is titled, “Survivorship Therapy needs after Radiotherapy for head and Neck cancer: surveying opportunities for Growth (STRONG).”

Funding for this study was provided, in part, by National Institutes of Health's National Center for Advancing Translational Sciences, Grant Number UL1TR001422.

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