Head and Neck Cancer Survivorship Update: Recent Findings in Post-Treatment Neck Disability, and the Effects and Prevalence of Inadequate Health Literacy in Patients

Head and neck cancers (HNC), even if cured from a primary disease standpoint, can leave lasting and severe morbidities and quality-of-life issue for patients. Head and neck cancers (HNC) 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.

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. Some of the newest findings related to neck disability after treatment, and how a patient’s health literacy can affect their ongoing treatment, have been a focus of both Marci Nilsen, PhD, RN, a researcher at the University of Pittsburgh School of Nursing and one of the nurses in the Survivorship Clinic (and who initially worked to launch it with a group of colleagues, including department chair Jonas Johnson, MD, FACS), and Leila Mady, MD, PhD, MPH, who is currently a fifth-year resident in the Department of Otolaryngology.

HNC Treatment and Neck Disability

Surgical treatments for HNC can present patients with substantial morbidity in relation to various aspects of neck disability and concomitant declines in quality of life. Dysphagia and potential complications, fibrosis and accompanying pain and limited range of motion, disruptions to sleep patterns, and other issues are potential, serious, long-lasting complications that patients may experience. Coupled with the growing population of younger HNC patients due to the increasing incidence of human papillomavirus-associated HNC, post-treatment morbidities such as neck disability may present as a much longer consequence of treatment as treatment efficacy increases and more survivors are living longer.

But what about neck disability after non-surgical treatment approaches to HNC? This aspect of neck disability post-HNC treatment has been a recent focus of Drs. Nilsen and Mady and their colleagues in the Survivorship Clinic. “Nonsurgical treatments for HNC and resulting neck disability has not attracted a lot of research, and there are few studies in the literature that have been devoted to the subject,” says Dr. Nilsen.

A new study, for which preliminary results were presented in an abstract at the 2018 AHNS annual meeting (the full study is currently under review for publication), sought to provide a basis for and determine the prevalence of neck disability in three cohorts of HNC patients: 1) those that received nonoperative treatments of radio-therapy or chemotherapy, or a combination thereof, 2) surgical resection only, and 3) surgical resection plus adjuvant therapy.

Preliminary prospective study¹ findings examined 173 cases of squamous cell carcinoma of the head and neck in the primary setting. Highlights of the study include the following outcomes. More than half of the patients in the study reported some form of neck disability. Of that total, more than a third reported a degree of disability from moderate to complete. More than half of the nonoperative treatment cohort reported neck disability. Those individuals that had both surgery and adjuvant therapy were more likely than others to report neck disability.

These findings speak to the growing body of evidence of the substantial impacts to quality of life that HNC treatments can pose to patients. And both Drs. Nilsen and Mady say that clinicians need to be able to not only screen patients for treatment-related toxicities but to better advise them in advance of the potential complications. “I’ve heard many — perhaps too many times — from patients who have experienced severe treatment toxicities, that if they had known how bad it could get, or how burdensome these potential outcomes could be, they would have been better prepared and understood this possible symptom burden, and may have made different decisions or preparation for their care. We have to set proper expectations with these patients, because under-communicating the risks leads to bad outcomes for both patient and provider,” says Dr. Mady.

And while this communication and ongoing assessment of the patient is critically important to the care process, it has to be conducted in a disciplined and clear manner, and take into account the patient’s health literacy. This notion of the importance of managing to a patient’s health literacy is another ongoing research area for the Survivorship Clinic, and an area in which its clinical practice and measurement are being tested and refined.

Health Literacy and HNC — Perspectives and Practice

Understanding and managing to a patient’s health literacy level is virtually as important to their overall care as their actual treatment. If a patient cannot fully comprehend their care instructions, they are at higher risk for treatment noncompliance which inevitably leads to decreases in quality of life and morbidity. “As clinicians, we likely assume a much higher level of literacy than our patients actually have. The communication process is complex, intense, and can happen quickly. Many of our patients present with advanced disease that will require complex treatment. Proactively assessing literacy and managing the patient to that level ought to happen much more frequently than it likely does. Dr. Nilsen’s work in this area, with the implementation of a screening tool in the Clinic, and her ongoing research into the impact health literacy has on HNC survivorship, is an important aspect of how we care for our patients,” explains Dr. Mady.

From a clinical perspective, the Survivorship Clinic implements the screening protocol as part of the initial patient intake process. “We use the three-question Brief Health Literacy Screen (BHLS), which assesses a patient’s perception of their health literacy. It’s subjective, so there are some limitations, but it gives us a score and a starting point for how we may need to communicate with the patient. The entire multidisciplinary care team that the patient is going to see during their Clinic visit has instant access to this information — before they even lay eyes on the patient for the first time,” says Dr. Nilsen.

This work, of course, is also being rigorously tested and analyzed as part of ongoing studies. An initial analysis of the use of the BHLS in the Survivorship Clinic by Dr. Nilsen and one of her students, Anna Dainauski, looked at the prevalence of inadequate health literacy in a cohort of patients from the Clinic. Of the 232 subjects, 17 percent (40) scored low enough on the BHLS to be deemed to have inadequate health literacy. Interestingly, age seems to play a role, in that the mean age of these individuals was 68 compared to 63 for the group deemed to have an adequate level of literacy. Other factors such as type of disease and stage, marital status, and gender did not appear to be significant with respect to literacy levels.

“This small study shows us a couple of things. First, that our screening protocol works, and second, that our study seems to be consistent with those in other patient populations,” says Dr. Nilsen. And this is but the first step in building the body of evidence that will be needed to reshape practice in the long term. Dr. Nilsen has recently secured a grant to study health literacy in an inpatient population using a different, more objective assessment tool. “We’re also now interested in looking at readmission rates in patients deemed to have lower health literacy levels to see if we find a correlation. The implications for that ought to be obvious — if we can prove there is a relationship. Beyond that, we’re also taking a look at outpatient data related to how well outpatients adhere to our treatment and therapy plans from the recommendations we send home with them.”

References and Further Reading

¹ Nilsen ML, Mady LJ, George SE, Pickford D, Johnson J. Neck Disability and Health-Related Quality of Life Among Head and Neck Cancer Survivors Following Surgical and Non-Surgical Treatment. Abstract of preliminary findings presented at the AHNS 2018 Annual Meeting.
² Examining the Prevalence of Inadequate Health Literacy Among Head and Neck Cancer Patients. Dainauski A, Johnson JT, Nilsen ML. Poster presentation.
³ 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; Epub ahead of print.
⁴ Mady LJ, Nilsen ML, Johnson JT. Head and Neck Cancer in the Elderly: Frailty, Shared Decisions, and Avoidance of Low Value Care. Clin Geriatr Med. 2018; 34(2): 233-244.