Grant Fuels Innovative Survivorship Study for HPV-Related Head and Neck Cancer
Summary
- A $114,000 grant is funding a self-guided, web-based survivorship program for people with HPV‑related head and neck cancer.
- Sylvester researchers are adapting an evidence-based stress management model to address long-term physical and emotional challenges.
- The digital program aims to improve quality of life for younger survivors balancing work, family and recovery.
For many patients with HPV-related head and neck cancers, the transition from active treatment to survivorship can be unexpectedly difficult.
With support from the Community Foundation for Brevard, investigators at Sylvester Comprehensive Cancer Center, part of the University of Miami Miller School of Medicine, are launching a $114,000 pilot study to develop and test a fully self-guided, web-based stress management and health promotion program tailored to survivors of HPV-related head and neck cancer.
Led by co-principal investigators Frank Penedo, Ph.D., and Akina Natori, M.D., M.S.P.H., the study addresses a critical and growing need. As more people survive HPV-related oropharyngeal cancers, particularly younger, working-age adults, accessible tools to manage the long-term physical and emotional effects of cancer are increasingly important.
Life After Treatment Brings Lasting Challenges for HPV‑Related Cancer Survivors
HPV-related head and neck cancers have reshaped the disease’s demographic profile. Once seen primarily in older adults, these cancers now frequently affect patients in their 40s and 50s, many of whom may live for decades after treatment. Survival, however, often comes with lasting challenges that can compromise quality of life.
Surgery and radiation can permanently affect speech, appearance and eating. Some survivors withdraw socially because of embarrassment or frustration. Others experience chronic pain, dry mouth, nutritional challenges or persistent emotional distress.
“Today more than ever, many of our head and neck cancer patients are successfully treated, which is wonderful,” said Dr. Penedo, associate director for population sciences and director of Sylvester’s Survivorship and Supportive Care Institute. “But they often struggle with treatment-related fatigue, anxiety, changes in speech or swallowing and uncertainty about returning to work or fully re-engaging socially. Fear of recurrence or progression is also a major concern. Survivorship care must address these complex and long-term physical and emotional effects to ensure our survivors experience the best possible quality of life.”
Closing Gaps in Support With Digital, Self‑Guided Care
The study grew out of both clinical experience and patient-reported data. At Sylvester, South Florida’s only National Cancer Institute-designated cancer center, outcomes are routinely monitored through My Wellness Check, with technology-based, remotely delivered interventions available to help address the challenges of the cancer experience.
Tracking these outcomes revealed high rates of fatigue, distress and unmet supportive care needs among HPV-related head and neck cancer survivors. Yet research on how technology-based programs can effectively improve outcomes for this specific group has been limited. Many survivors are younger adults balancing careers, child care and financial responsibilities, making in-person programs difficult to attend.
“Traditional survivorship programs often require patients to come to the clinic at a set time,” said Dr. Natori, an assistant professor of medical oncology at the Miller School. “For younger survivors who are working and raising families, that’s not always realistic. We wanted to create something evidence-based, but flexible and accessible.”
Adapting a Proven Stress Management Model for Survivors
The intervention is built on cognitive behavioral stress management, an evidence-based approach pioneered by Dr. Penedo and his colleagues at Sylvester. Grounded in cognitive behavioral, stress and self-management theory, the program provides tools to help participants reframe unhelpful thoughts, develop coping strategies, practice relaxation techniques and set meaningful health goals.
“For decades, cognitive behavioral stress management has demonstrated improvements in stress, mood and quality of life among cancer patients,” Dr. Penedo said. “We’re now adapting this gold-standard intervention into a fully self-guided digital format specifically tailored to the unique challenges of HPV-related head and neck cancer survivors.”
Unlike earlier web-based models that incorporated live facilitators, this platform will be entirely self-guided. Participants will complete one module per week over 10 weeks, logging into a secure portal at their convenience. Each approximately 60-minute module will feature multimedia content addressing stress management, coping skills, social support, physical activity, nutrition, smoking and alcohol cessation and other survivorship topics.
The first phase will include interviews with survivors and clinicians to refine content and usability, followed by testing the program’s feasibility and its impact on quality of life.
“Survivors face multiple needs, particularly among younger head and neck cancer patients,” Dr. Natori said. “By incorporating their feedback from the outset, we can ensure the program is both targeted and meaningful.”
Advancing Patient-Centered Cancer Survivorship Care
Sylvester has a longstanding commitment to patient-centered survivorship research and leadership in behavioral oncology and digital health innovation. Because the program is web-based, it has the potential to reach survivors in rural areas or communities without access to comprehensive supportive care services. While the pilot focuses on HPV-related head and neck cancer, the platform could ultimately be adapted for other cancer types.
“This is a first step,” said Dr. Penedo, the Sylvester DCC Living Proof Endowed Chair in Cancer Survivorship. “If we demonstrate feasibility and benefit, this model could be expanded to other head and neck survivor groups and scaled nationally.”
For Dr. Natori, a former head and neck medical oncologist, the project is deeply personal.
“These patients survive cancer, but they continue to carry the burden of its effects,” she said. “If we can provide tools that reduce stress, improve coping and help them reclaim their lives, that’s meaningful survivorship care.”
Dr. Natori added that the project would not be possible without community partnership.
“We are deeply grateful to the Community Foundation for Brevard for investing in this work,” she said. “Their support allows us to innovate, reach survivors where they are, and build a model of survivorship care that can truly change lives.”
As more younger adults live long lives after HPV-related head and neck cancer, survivorship support must evolve just as rapidly. At Sylvester, researchers are working to ensure that cure is not the end of care, but the beginning of a stronger, healthier future.
More from Sylvester’s Survivorship Program
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Sylvester Comprehensive Cancer Center is a host site for the SMART 3RP Lymphoma clinical trial for lymphoma patients.
Romero Britto created a custom work of art for Sylvester Comprehensive Cancer Center to spread a message of love and hope to cancer patients.
The 4th Annual Sylvester Cancer Survivorship Symposium explored one question that now defines modern oncology: How will you live?
Tags: cancer research, cancer survivorship, Cancer Survivorship Program, Cancer Survivorship Symposium, Dr. Frank Penedo, GCRB, head and neck cancers, Sylvester Comprehensive Cancer Center, Sylvester’s Survivorship and Supportive Care Institute