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Head and Neck Cancer Survivorship Update: New Research Into Treatment Financial Toxicity

December 18, 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.

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 in December 2016, the Survivorship Clinic has surpassed the 1,000-patient mark in its first years of operation, a statistic that highlights the need for such a clinic and also reinforces 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.

New Research in HNC Treatment Financial Toxicity

The burdens thrust upon HNC patients and survivors are significant and life-altering, from diagnosis through treatment to post-treatment survivorship. Traditionally, most attention has been paid to the physical, emotional, and psychological tolls HNC inflicts on its victims.

However, a fourth treatment toxicity domain has garnered increasing attention from Department researchers: financial toxicity (FT). As new research is uncovering, the financial implications of a diagnosis of HNC tend to be overwhelming for many, and they can persist long after the diagnosis and initial therapies have been provided.

A new study1 published this year by Survivorship Clinic members Jonas Johnson, MD, FACS, chair of the Department of Otolaryngology; Marci Nilsen, PhD, RN; and lead author Leila J. Mady, MD, PhD, MPH, and colleagues examined data collected on patients from the Clinic to begin to understand the true nature and implications of the financial strains placed on patients recovering and living after HNC.a

Published in the journal Oral Oncology, the new study describes the type and levels of FT in HNC survivors, its characteristics and impact on quality-of-life measures, how patients manage or cope with the financial burden of care, and other measures.

The study was conducted on a cohort of 104 HNC patients whose primary disease was located in either the oral cavity, larynx/hypopharynx, or oropharynx. This is the first study to examine FT in HNC patients by the site of the disease with several findings of the impact of cancer site on FT.

Across the entire patient cohort, a significant percentage of patients (40.5%) were shown to exhibit a high level of FT. Those with a larynx/hypopharynx cancer experienced FT at higher levels than those with oral cavity or oropharynx disease.

Factors such as age, marital status, income level, and education level also correlated with worse FT. The younger a patient was at the time of diagnosis was a factor in higher FT. Unmarried individuals and those with lower education levels also suffered higher levels of FT. The majority of patients, 60%, indicated that they needed to use portions of their income savings or take out loans in order to pay for their care.

“Patients with higher levels of financial stress will adapt to the situation, sometimes by exhausting their savings and accruing burdensome loans, but they also will postpone or forgo treatments entirely. Alternatively, as we learned, they may try to compensate by other means by working more or finding additional sources of income,” says Dr. Mady.

Solutions to the general problem that patients — some even with what would be considered good or adequate health insurance — cannot afford their treatments will not be easily addressed. However, one mechanism that may begin to address the problem is the ability to screen patients upfront for potential FT and work to address the issue before beginning treatment.

While not exhaustive in nature, this study points to the need for larger investigations to further explore the risk factors and consequences of FT in HNC patients, and to examine the effects of other ways patients may adapt to their care situation that may have even more influence over their long-term treatment and health than the factors identified in this study. Currently, Dr. Mady is the Principal Investigator of a prospective investigation supported by an American Academy of Otolaryngology — Head and Neck Surgery Foundation Health Services Research Grant which is examining FT longitudinally over time. 


1 Mady LJ, Lyu L, Owoc MS, Peddada SD, Thomas TH, Sabik LM, Johnson JT, Nilsen ML. Understanding Financial Toxicity in Head and Neck Cancer Survivors. Oral Oncology. 2019; 95: 187-193.

Further Reading

Nilsen ML, Lyu L, Belsky MA, Mady LJ, Zandberg DP, Clump DA 2nd, Skinner HD, Peddada SD, George S, Johnson JT. Impact of Neck Disability on Health-Related Quality of Life among Head and Neck Cancer Survivors. Otolaryngol Head Neck Surg. 2019 Oct 15:194599819883295.

Thomas T, Hughes T, Mady L, Belcher SM. Financial Toxicity: A Review of the Literature and Nursing Opportunities. Clin J Oncol Nurs. 2019 Oct 1; 23(5): 5013.

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.

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.

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 May; 34(2): 233-244.