Head and neck cancer can take away a patient’s “right to feel human,” and its impact on physical appearance, physical functioning, and general quality of life can be devastating, according to Merry Sebelik, MD, Associate Professor of Head and Neck Surgery at Emory University in Atlanta. At a symposium hosted by the Winship Cancer Institute and Emory University—Updates in the Management of Head and Neck Cancer—Dr. Sebelik discussed providers’ roles in helping patients maintain their rights to look and feel human and to interact in society.1
Merry Sebelik, MD
According to Dr. Sebelik, quality-of-life measurements affect patient outcomes in two broad categories. “In a research setting, quality-of-life measures help us to stratify outcomes well beyond disease control and survival rates,” she said. “In the clinic, quality-of-life awareness and understanding help us to be better clinicians and allow us to incorporate patient attitudes and goals of treatment into our treatment choices.”
Common measurements with regard to cancer and its treatment are toxicity, morbidity, adverse events, survival, and performance status. In head and neck cancer, common measured functions include swallowing, speech, appearance, pain, mobility, and depression. “But on the other side of this are patient-reported outcomes,” she noted. “And patient perceptions can be very different from clinician perspectives.”
Impact of Appearance
“The impact of appearance on quality of life is powerful,” said Dr. Sebelik. “It’s not cosmetic, it’s not superficial, and it’s not trivial. This is what allows us to get out and interact with our families and society.”
Several quality-of-life instruments contain patient-reported appearance-related measurements, such as satisfaction with appearance and effect on self-esteem. The Derriford Appearance Scales (DAS59 and DAS24) are psychological measures of appearance concern, validated for use in clinical and research settings and dedicated solely to appearance. The University of Washington Questionnaire (which measures 12 functional outcomes) and the European Organisation for Research and Treatment of Cancer Quality-of-Life Questionnaire compare favorably to the Derriford Scales, she noted.
“One of the paradigms in head and neck cancer is that we can achieve long-term cure rates, which means we have to pay more attention to the quality of survival,” explained Dr. Sebelik. “But I also treat patients with nonmalignant disease, and overall treatment of benign but clinically obvious disease in the head and neck is not well studied.”
One study of quality-of-life outcomes in patients who underwent thyroid surgery for large benign goiters2 used an instrument called the Short Form-36, a validated generic scale that evaluates common adverse side effects of head and neck cancer: physical functioning, role limitations, bodily pain, general health, vitality, social functioning, role limitations, and mental health. And a specific thyroid-related quality-of-life measure called the ThyPRO has recently come out of Denmark. “This tool is unique in that it is entirely patient reported,” revealed Dr. Sebelik. “It has been found to have excellent responsiveness and the ability to detect relevant treatment effects.”
Surgeons and Patients May Differ
Much focus has been put on minimizing the length of incisions in the removal of head and neck tumors, but several studies have compared surgeons’ and patients’ objective opinions on scar appearance; in short, surgeons seem to care about the length of incisions, and patients don’t.3 “This isn’t universally applicable, but generally, in the American population, this applies,” noted Dr. Sebelik. “This quality-of-life measure is a good illustration of surgeons and patients not always being on exactly the same page.”
Another disparity between patient desires and clinician goals involves retention of voice in head and neck cancer. In a 1991 landmark study,4 it was discovered that advanced laryngeal cancer could be treated without a laryngectomy, and the patient’s voice could be preserved. These results were groundbreaking and were rapidly incorporated into clinical practice.
“There was a big assumption that patients would want to keep their larynx and voice, that it was such a high priority to patients that we needed to look for an alternative treatment paradigm,” she continued. “But a 2009 study5 showed us that maybe we missed the mark.”
In the decade and a half since primary treatment for advanced laryngeal cancer went from laryngectomy to nonsurgical treatment, it was found that laryngeal preservation was actually associated with decreased survival for patients with stage IV disease, specifically among those with T4 primary tumors. The data suggested the previous shift toward nonoperative treatment was possibly associated with national decreases in survival from laryngeal cancer.
“This was the beginning of the recognition that surgical treatment was a good idea as the definitive initial treatment in these patients with T4 disease,” said Dr. Sebelik. The study also brought to light patients’ perspectives. “Maybe their desire to keep a larynx and a lung-powered voice is secondary to surviving,” she said. “Patients’ number-one goal is to survive their cancer; that still trumps everything else.”
Patient Values First and Foremost
Dr. Sebelik stressed the importance of focusing on patient values first and foremost. Some patients desire to retain the ability to eat and swallow over the ability to speak. Tracheoesophageal prosthesis can give patients a “reasonable voice,” she said, and various questionnaires can help characterize the quality of prosthesis-produced speech.
“Patients value survival, and so do we,” she concluded. But beyond survival, especially in patients living years after their cancer diagnosis, clinicians should understand patients’ baseline values, coping skills, support system, comorbidities, resources, and, most of all, their end-of-life wishes, added Dr. Sebelik. ■
Disclosure: Dr. Sebelik reported no conflicts of interest.
1. Sebelik M: Quality of life in head and neck cancer survivors: Optimizing functional outcomes. 2017 Winship Cancer Institute of Emory University Updates in the Management of Head and Neck Cancer Symposium. Presented April 22, 2017.
2. Jafari A, et al: Thyroid surgery in a resource-limited setting. Otolaryngol Head Neck Surg 156:464-471, 2017.
3. O’Connell DA, et al: Objective and subjective scar aesthetics in minimal access vs conventional access parathyroidectomy and thyroidectomy surgical procedures. Arch Otolaryngol Head Neck Surg 134:85-93, 2008.
4. Department of Veterans Affairs Laryngeal Cancer Study Group, Wolf GT, Fisher SG, et al: Induction chemotherapy plus radiation compared with surgery plus radiation in patients with advanced laryngeal cancer. N Engl J Med 324:1685-1690, 1991.
5. Gourin CG, et al: The effect of treatment on survival in patients with advanced laryngeal carcinoma. Laryngoscope 119:1312-1317, 2009.