Leadership in Head and Neck Cancer

Head and neck cancer accounts for approximately 4% of cancer cases in the U.S. — affecting more than 60,000 people each year. The majority of those diagnosed are over the age of 50, but a rising rate of HPV-associated head and neck cancer means younger patients are being diagnosed more and more.

As head and neck cancer incidences increase, UPMC Hillman Cancer Center is dedicated to research and clinical innovations to better help patients diagnosed with this cancer.

Research Excellence in Head and Neck Cancer

The University of Pittsburgh and UPMC Hillman host one of only five Specialized Program of Research Excellence (SPOREs) in head and neck cancer in the nation, led by Robert L. Ferris, MD, PhD, and Heath Skinner, MD, PhD. The goal of the SPORE is to better understand the efficiency of personalized treatments for head and neck squamous cell carcinoma.

With 15 years of prior funding for the SPORE, head and neck cancer research at UPMC Hillman includes an organ-specific database with detailed clinical and pathological information on over 12,000 patients followed for more than 30 years, four novel investigator-initiated clinical trials, and a team comprising both highly experienced and established investigators and accomplished early-stage investigators.

Head and Neck Cancer Survivorship Clinic

While the SPORE aims to better understand treatments, another program at UPMC Hillman and the University of Pittsburgh — the Head and Neck Cancer Survivorship Clinic — focuses on life both during and after treatment.

Marci Nilsen, PhD, RN

Marci Nilsen, PhD, RN

A member of the Biobehavioral Cancer Control Program at UPMC Hillman, Marci Nilsen, PhD, RN, noticed how many patients had a variety of side effects that had an impact on their everyday lives even after their cancer was treated, including the inability to communicate with their providers. Dr. Nilsen and Jonas Johnson, MD, developed the Survivorship Clinic in 2016 to address those side effects in a multidisciplinary, patient-centered way.

“In realizing that these issues go beyond one provider, we wanted to bring together a multidisciplinary team,” Dr. Nilsen says. “We can really get a more collaborative care approach to helping these patients address their symptoms and side effects.”

The Survivorship Clinic addresses a multitude of issues that head and neck cancer survivors face including swallowing therapy, dental health, audiology, and physical therapy. Drs. Nilsen and Johnson learned that seeing patients at any stage of their disease, not exclusively directly after treatment, could be life-changing for that patient.

“It’s not uncommon for us to be evaluating and discussing care with a patient who has recently been diagnosed, and we also see patients who are long-term survivors, some of whom are 30- and 40-years post-treatment,” says Dr. Nilsen.

Beyond Treatment: Addressing Health Literacy for Better Care

In January 2023, Drs. Nilsen and Johnson and colleagues published their findings in Health Literacy Research and Practice demonstrating that adherence to referrals for physical therapy is related to health literacy. Adjusting for age, primary tumor site, and treatment stage, the team found that patients with inadequate health literacy were half as likely to follow up with initial physical therapy care. But they also found that adherence to speech-language pathology therapy is not associated with health literacy level.

To ensure their patients are getting the best care possible, the clinic uses a screening protocol as part of the initial patient intake process that the whole team has access to prior to seeing that patient.

“We use the three-question Brief Health Literacy Screen, which assesses a patient’s perception of their health literacy,” says Dr. Nilsen. “It’s subjective, so there are some limitations, but it gives us a score and a starting point and helps us tailor our communication with the patient.”


Harley RJ, Atchison K, Li J, Losego K, Wasserman-Wincko T, Johnson JT, Nilsen ML. Health Literacy and Adherence to Clinical Recommendations in Head and Neck Cancer. Health Lit Res Pract. 2023;7(1):e52-e60. doi:10.3928/24748307-20230222-01

Written by: Annaliese Daniels
Reviewed by: Marci Nilsen

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