Skip to Content

HNC Survivorship Update: New Research and Clinical Programs

March 20, 2019

Head and neck cancers (HNC), even if cured from a primary disease standpoint, can leave lasting and severe morbidities and quality-of-life issues for patients. HNCs constitute the sixth leading cause of cancer worldwide, and there are approximately 60,000 new cases diagnosed annually in the United States. The majority of new cases are diagnosed as late-stage disease and typically have been associated with older adults — over the age of 50. However, with the rising rate of human papillomavirus-associated HNC, the overall trends are leading to an increase in cases and more cases diagnosed in younger individuals.

Helping to prepare patients for these potentials before treatment and working with them to help them cope with the post-treatment management of their condition after the fact is the domain of the UPMC Head and Neck Cancer Survivorship Clinic in the Department of Otolaryngology.

The burdens of these cancers for afflicted patients are significant, from diagnosis through treatment, to post-treatment survivorship. The physical, emotional, psychological, and financial implications of a diagnosis of head and neck cancer tend to be overwhelming for many, and they persist long after the diagnosis and initial therapies have been provided.

Encompassing a range of disciplines and services, the Survivorship Clinic tackles all aspects of HNC patient care prior to and after treatment. Physical therapy, dental health, swallowing therapy, and audiology are combined alongside other disciplines to create a cohesive, individualized program of care designed to deal with the biopsychosocial complexities of HNC patients. Launched officially in December 2016, the Survivorship Clinic has surpassed the 1,000-patient mark in its first two years of operation, highlighting the need for such a clinic and also reinforcing the significant challenges and ongoing care HNC survivors need.

Beyond and behind the Clinic’s multidisciplinary care structure is an active research program that is investigating crucial aspects of HNC patient care — some of which receive little attention in the field but are nonetheless critical to long-term outcomes, patient satisfaction, and quality-of-life measures, and the oft-burdensome continuing costs of care and financial impacts associated with HNC.

Below are overviews of several recently published studies on topics in HNC survivorship from members of the Survivorship Clinic, and also discussions of several important new areas of focus in their research.

Jonas Johnston MD

Jonas Johnson, MD, FACS, chair, Department of Otolaryngology

Marci Nilsen

Marci Nilsen, PhD, RN, researcher, University of Pittsburgh School of Nursing


Treatment Burdens in HNC: Neck Disability Correlates With Swallowing Difficulties

Just published in January, Drs. Nilsen and Johnson, along with colleagues from the Department, provide several new insights on treatment burden in HNC survivors based on data collected from their clinic, during its first two years of operation.

Their paper, “Burden of Treatment: Reported Outcomes in a Head and Neck Cancer Survivorship Clinic,”1 published in the journal Laryngoscope, reinforces the significant and highly prevalent effects bearing down on HNC survivors post-treatment.

Of particular note is the prevalence of swallowing dysfunction and its impact on quality-of-life measures in HNC survivors. The study was notable in that swallowing dysfunction appeared to be worse the further out from treatment one gets.

HNC survivors beyond the six-year point reported more or worse swallowing difficulties than did others. Of the 228 individuals in the study, 56 percent, or 132 individuals, reported they were suffering from three or more side effects related to their overall treatment, with varying degrees of decrease in quality-of-life measures.

“Everything we are learning tells us that post-treatment dysfunction and quality of life is compromised in the majority of HNC patients, and more so than I think the medical community realizes. Difficulty swallowing is not just a simple problem that can be dismissed. The degrees to which it can affect an individual and the severity of complications that can arise are profound. Part of our research priority is to make this information as widely known as possible. Real suffering is happening, much in a silent manner by those afflicted. Our goal is to cast a light on it and work to devise treatment approaches that are less toxic while giving every level of support we can to survivors for as long as they need it,” says Dr. Johnson.

Pain in the HNC Survivor

Continuing along the post-treatment line of research, Drs. Nilsen and Johnson published findings on a study2 that examined the prevalence and predictors of pain in HNC survivors, and the influence of pain on various quality-of-life measures.

As one might expect, a significant portion of individuals in the study reported having some form or degree of pain after their HNC diagnosis and treatment. A fraction more than 45 percent indicated some level of ongoing pain, with 11.5 percent classing their level of pain as severe. This is all at a median of 6.6 years after diagnosis, showing that not only is pain prevalent, but it can be persistent.


Cognitive Impairment Research

The issue of cognitive impairment in pre- and post-treatment head and neck cancer patients is a new line of research Drs. Nilsen, Johnson, and their colleagues in the Survivorship Clinic are actively engaged in and working on manuscripts for publication.

There have been some prior studies on the subject conducted, but very little is known outside of the fact that many HNC patients report cognitive issues before and after their treatments, making it likely another unfortunate consequence of HNC. Very little also is known about any long-term cognitive issues or declines.

Drs. Nilsen and Johnson have devised study protocols that use a battery of testing to determine baseline cognition and changes after diagnosis and treatment, and they also are interested in DNA changes in patients that may point to or correlate with changes over time.

“Chemotherapy and radiation treatments and even the anesthesia given during surgical procedures may be affecting or causing changes in cognition. We hope to be able to tease apart some of these changes and their effects using an accelerated aging framework. Essentially this means that any part of treatment can have an impact on one’s biological makeup — DNA damage, oxidative stress, and changes in the blood-brain barrier. Cancer therapies can affect all of these and more, essentially accelerating the aging process and perhaps contributing to cognitive declines,” says Dr. Nilsen.

Their study hopes to enroll approximately 80 control-matched patients in two distinct cohorts — HNC patients who have had a lengthy surgery and those who have not.

“Nobody knows for sure what happens to cognition in these patients. Many questions need to be answered, and we see this project as a pilot for what we hope will eventually be a much larger study. Those studies conducted so far are small and do not have the power to assess fine changes, especially across multiple areas of cognition,” says Dr. Nilsen.

For this reason, this new pilot study is designed to assess many attributes of cognition, including attention, working memory, learning memory, and executive function. Secondary outcomes to be investigated include mental flexibility, psychomotor skills, and perceived cognitive ability.

Caregiver Burden in HNC

Having a family member with any serious, chronic, or long-lasting illness puts tremendous strain and stress on the individuals tasked with helping to care for their family member or loved one. The strain and stresses are emotional, physical, financial, and social. The burdens literally extend into every aspect of a person’s life. Much has been written about caregiver burden in Alzheimer’s disease and other chronic illness. Dr. Johnson sees the same kinds of burdens and issues with family members of HNC patients who visit the Survivorship Clinic. It is a scenario that becomes evermore apparent each day, and one that begs for heightened awareness in the medical community to better understand it, research its causes and complications, and devise solutions to mitigate the lasting damage it can cause to the individual and the family unit. All of these aspects are in focus and coming under the research priorities of the Survivorship Clinic.

“We have had family members in the office weep because of the challenges of caring for HNC survivors can be so extreme. Moreover, it extends well beyond those unfortunate individuals with a lethal form of HNC for which we can do nothing to stop it. For the individuals who are essentially cured of the cancer, they may have the rest of their lives to deal with the effects of being harmed by a treatment or therapy that cured their underlying cancer but now has affected such fundamental things as their ability to swallow, their ability to speak, cosmesis, and unrelenting pain. These are problems that affect the whole family, and our clinic is becoming heavily involved in devising ways to deal with this caregiver burden,” says Dr. Johnson.


1 Nilsen ML, Mady LJ, Hodges J, Wasserman-Wincko T, Johnson JT. Burden of Treatment: Reported Outcomes in a Head and Neck Cancer Survivorship Clinic. Laryngoscope. 2019 Jan 15. doi: 10.1002/lary.27801. Epub ahead of print.

2 Cramer JD, Johnson JT, Nilsen ML. Pain in Head and Neck Cancer Survivors: Prevalence, Predictors, and Quality-of-Life Impact. Otolaryngol Head Neck Surg. 2018 Nov; 159(5): 853-858.