The term head and neck cancer (HNC) refers to the malignancies that usually arise from the squamous cells that line the mucosal surfaces of the head and neck. Head and neck squamous cell carcinomas (HNSCCs) are the most frequent histological subtype, accounting for up to 90% of HNCs. It is the sixth most frequent cancer worldwide, annually accounting for more than 550,000 cases and about 300,000 fatalities every year [1, 2]. Tongue and buccal mucosa cancers are common in India and have been linked to the traditional practice of chewing paan, betel leaf, and tobacco [3].
HNSCCs are most frequently seen as locally advanced tumours, causing significant symptoms in a patient. The etiology for HNC can be manifold. It may be related to certain environmental factors and lifestyle patterns. The two most important risk factors for HNCs, particularly cancers of the oral cavity, hypopharynx, and larynx, are reported to be alcohol and tobacco use [4, 5]. The risk of developing cancer is higher in persons who consume tobacco and alcohol rather than those who consume either of these two [6, 7]. Infection with cancer-causing strains of the human papillomavirus (HPV), particularly HPV type 16, is linked to oropharyngeal tumours of the tonsils and base of the tongue [8, 9]. The use of paan (betel quid) in the mouth, a common custom in Southeast Asia, has been linked to a higher risk of oral cancer [10, 11]. Other causes may include Epstein-Barr virus infection, occupational exposure, radiation exposure, or underlying genetic conditions [12,13,14,15].
The major treatment choices available for HNC are surgery, chemotherapy (CT), and radiation therapy (RT). Most often, these approaches are used in combination for treatment. When the treatment comprises of surgery as the primary mode, followed by post operative radiation therapy, this type of RT is referred as adjuvant radiation therapy.
The primary goal of HNC treatment is to keep the disease under control while preserving as much function as possible. The popularity of organ preservation regimes in cancer care has increased the use of non-surgical treatment options, namely radiation therapy in combination with chemotherapy. This form of RT is called as definitive radiation therapy.
During RT, toxicities develop due to the disruption of healthy cells near the treatment site, especially in regions receiving a high dose. The severity and type of toxicity experienced by each person may vary considerably as these depend on the treatment sites. Radiation therapy reactions sometimes occur in the second or third week following the commencement of treatment and can often continue for several weeks after treatment is completed.
Radiation therapy for HNC may present several acute toxicities like dry mouth, sore mouth and gums, swallowing difficulties, stiffness in the jaw, nausea, hair loss, lymphedema, tooth decay, etc. Patients may also develop redness, irritation, thicker saliva, ear pain, nausea during and after treatment, as well as a loss of taste, which can reduce appetite and impact nutrition. Patients may experience jaw stiffness and may be unable to open their mouths as wide as they could. In many patients, these adverse effects will fade over time, but long-term complications such as swallowing difficulties are known to persist.
Symptoms such as fatigue, nausea, or pain can only be identified and described appropriately by the person experiencing it. It is a subjective indicator of disease or any physical distress. A sign, on the other hand, is any objective evidence of disease that can be recognized by the patient or treating professionals. Evaluating these symptoms that arise as a result of radiation, is often considered a challenging task for practicing clinicians. It is often difficult for the patients to describe the magnitude of the symptoms and its effect on their day-to-day life.
Patient-reported outcome measures (PROMs) provide information on different areas of a patient’s health status that are important to their quality of life (QOL) such as functionality as well as an integration of physical, mental, and social health. PROM tools can be generic, i.e., applied across different populations, or condition-specific, where they are specific or unique to particular diseases or sectors of care. Patient-reported outcomes are critical for determining whether healthcare interventions and procedures improve a patient’s health and QOL. PROMs can be used by clinicians to improve patient-provider communication and patient involvement in decision-making. “The Vanderbilt Head and Neck Symptom Survey (VHNSS)” is one such PROM tool that can be used in the HNC population.
The VHNSS is an instrument designed specifically for HNC patients to assess oral toxicities and changes in oral functioning in patients with HNC who receive radiotherapy. It was first developed by Murphy et al. in the year 2009 to provide a more comprehensive assessment of oral health problems in the HNC population of the United States [16]. However, the initial version did not account for certain important domains like mucosal sensitivity and dental health. This led to the development of another revised version, i.e., VHNSS 2.0.
This version consists of 10 domains along with 3 single items: making it a total of a 50-item questionnaire. The domains are related to the patient’s nutrition, swallowing solids, swallowing liquids, dry mouth, mouth pain, general pain, mucus, voice/communication, hearing, taste/smell, teeth, neck range of motion, and trismus. Scoring is done on an 11-point Likert scale.
Few of the tools that are used clinically across the world to assess the symptoms and toxicities in HNC patients include the Functional Assessment of Cancer Therapy (FACT), MD Anderson Dysphagia Inventory (MDADI), Sydney Swallow Questionnaire (SSQ), Head and Neck Patient Symptom Checklist (HNSC) and the Eating Assessment Tool (EAT 10). In India, regional patients are often unfamiliar with the English language and there is a dearth of patient-reported tools in Kannada that address oral deficits in HNC patients. Questionnaires that have been already translated and validated into the Kannada language include the Dysphagia Handicap Index (DHI) and the EAT-10. The DHI is a questionnaire with 25 items, which evaluates a patient’s overall or general quality of life. It consists of 30 items in total and is divided into three main domains with 10 items each: physical, functional, and emotional. EAT-10 is yet another self-administered tool in Kannada for the population with dysphagia. This tool has a total of 10 questions related to the general quality of life but does do not address the oral toxicities that arise due to treatment for HNC.
In this study, a sociocultural adaptation and translation of the VHNSS 2.0 in Kannada has been done and it was clinically validated on 36 HNC patients undergoing chemoradiation. The internal reliability was assessed using Cronbach’s alpha coefficient. As the use of alpha coefficient has been critiqued by psychometricians stating its underestimation of reliability [17], we calculated the Mc Donald’s omega coefficient also. Test–retest reliability was also assessed.