Translation and cross-cultural adaption of the Chinese version of the Vanderbilt Head and Neck Symptom Survey version 2.0: a tool for oral symptom assessment in head and neck cancer patients

Head and neck cancer (HNC), a heterogeneous group of upper aerodigestive tract malignancies, is the sixth most common cancer worldwide [1]. Each year, an estimated 560,000 new cases of HNC (including cancer of the oral cavity and pharynx, tongue, mouth, pharynx and other oral cavity regions) are diagnosed and an estimated 300,000 deaths [2]. The standard treatment for patients with HNC is surgery, radiotherapy (RT), chemotherapy, targeted therapy or a combination of these treatments [3, 4]. With the implementation of treatment strategies for the anatomical preservation of the structures, RT has been the most important therapeutic modality that is used to treat approximately 80% of the patients with HNC [5]. Despite enormous advances in RT planning and delivery, the disease and its treatment still have a disproportionate impact on a patient’s quality of life (QOL) [6, 7]. For example, treatment of HNC with radiotherapy often results in highly visible disfigurement and disruptions of essential functioning, such as deficits or complications in eating, swallowing, sleep, and speech. In particular, oral alterations are notable and include xerostomia, mucositis, taste and smell sensitivity alterations, dysphagia, excess mucus, reduced mouth opening and tooth alterations [8‐10]. A large proportion of patients with HNC survive after treatment, but some of the treatment sequelae influence the survivors’ QOL for a long time. HNC is believed to be the most psychologically traumatic cancer to experience. Thus, clinical administrators collaborate in a multidisciplinary team to develop cancer management plans and address treatment related side effects to improve survivors' QOL.

Although many instruments for the evaluation of QOL and psychosocial functioning exist, most are unavailable in the Chinese language or only include a few items for oral symptom assessment in HNC patients. The University of Washington Quality of Life Questionnaire (UW-QOL) [11, 12], the Functional Assessment of Cancer Therapy Head and Neck Scale (FACT-HN) [13] and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-H&N35 (EORTC QLQ-H&N35) are the most frequently used tools to assess QOL in HNC [14]. None of these instruments are specifically designed to screen for oral-related problems and are inconvenient for clinical practice. To date, no standard instrument has been developed for the assessment of oral-related symptoms. In 2009, the Vanderbilt Head and Neck Symptom Survey (VHNSS) was designed by Murphy et al. to provide an expanded assessment of oral health symptoms in the HNC population of the United States [15]. The survey includes 28 items and excludes questions that address general symptom control issues, such as fatigue, nausea/vomiting, and gastrointestinal symptoms, because they are not specific to HNC. However, some potential important adverse effects were insufficient or not included in VHNSS, such as mucosal sensitivity, dental health and truisms. Thus, VHNSS 2.0 was further developed from the original version [16]. The revised VHNSS 2.0 includes 50 items within 13 domains. The items are scored on a numeric scale rating the severity of the symptom from 0 (none) to 10 (severe). The VHNSS demonstrated adequate psychometric properties, including validity, reliability and sensitivity, and is a valid and reliable tool to identify HNC-specific symptom burden.

In 2014, VHNSS 2.0 was translated and cross-culturally adapted into Brazilian Portuguese [17], and the Brazilian Portuguese translated version presented good results for convergent validation and known-group analysis [18]. Most recently, VHNSS 2.0 was also translated and cross-culturally adapted into an Italian version [19], further demonstrating excellent feasibility and utility [20]. Thus, the VHNSS 2.0 scale is of great value to identify HNC-related symptoms in routine clinical practice. To date, the VHNSS 2.0 has never been validated and applied in Asian countries, making its universality restricted.

The goal of this study was to translate and cross-culturally adapt the original United States version to Chinese (Mainland China) according to a standardized, well-established procedure [21, 22] and conduct a pretest of the survey in HNC patients receiving radiotherapy to assess its simplicity and clarity.

In the present study, we successfully translated the original United States version of VHNSS 2.0 into a Chinese version, adapting it to the cross-culture habit of the target country and validating the tool in a pretest of HNC patients receiving radiotherapy. The multistep method of translation and cross-cultural adaptation used in this study has been consolidated in previous studies [17, 19]. To the best of our knowledge, it is the first translated scale in Chinese (mainland) with several domains of multidirectional oral functional assessment in a HNC population following radiotherapy.

During the process of translation and cross-cultural adaptation of the scale, grammatical and cultural adjustments were modified to adapt it to the Chinese context and facilitate the understanding of each item by experts and patients. We changed the first-person singular to the second-person singular, so the instrument could be used through self-assessment or evaluation by interviewers. In our study, 45% of the participants preferred self-assessment of the scale, whereas 55% chose evaluation by interviewers. Social and educational levels as well as age could potentially influence the choice. Some participants had a low educational level with lower income, making it difficult to perform a self-evaluation. Some patients were older and preferred to be assessed by interviews instead of performing a self-evaluation.

Although various tools have been developed to assess complications in HNC patients [25, 26], a focal and available instrument is still lacking for clinicians to evaluate and manage HNC-related problems in China. Thus, the present study was designed and performed. The original VHNSS developed by Professor Barbara A. Murphy aimed to provide a screening tool to help recognize HNC-specific symptoms and control problems in a timely fashion. The revised VHNSS 2.0 containing 50 items distributed into 13 domains is an effective and reliable tool for identifying the specific symptom of HNC [16, 27] and has been translated in Brazilian Portuguese [17] and Italian languages [19]. The original VHSSS exhibited good internal consistency (Cronbach’s alphas 0.74 to 0.95) [16], and this value is similar to that of our translated version. The assessment of equivalence by the expert committee demonstrated that the Chinese version of the VHNSS 2.0 is equivalent to the original United States version.

In the pretest, patients with nasopharyngeal carcinoma (NPC) accounted for most (76.7%) of the participants in our study. NPC is highly prevalent in Southern China with an annual incidence of 30 cases per 100,000 persons [28], which is in contrast to a lower incidence of 1 case per 100,000 persons in Western countries [29]. Additionally, some scholars refer to NPC as a “Chinese cancer”. From the first instruction question “I currently have a feeding tube in place”, we found that few patients used a feeding tube in China. The guidelines strongly recommend enteral feeding by naso-gastric or percutaneous tubes in radiation-induced severe mucositis or with an obstructive HNC mass [30]. Enteral tube feeding is indicated in cases of severe dysphagia and inadequate energy intake [31]. Studies have indicated that hypopharyngeal cancer, particularly T4 tumors, female sex, or combined radiochemotherapy, are high risk factors of dysphagia and more likely to require energy intake by tube feeding [32]. In our study, the percent of patients using feeding tube is relatively low (2.2%) possibly because the number of people with hypopharyngeal cancer constituted only a small minority (5.6%) of the study population or because the identification of those with decreased oral intake who require nutritional intervention is insufficient in the HNC population.

We acknowledge several limitations of this study. The sample size is relatively small and may affect the findings to some extent. Cronbach’s alpha is a test of internal consistency that is typically followed by a factor analysis to establish unidimensionality. Factor analysis was not conducted in the study because this would require a much larger sample size of at least 500 patients. Moreover, the participants were exclusively selected from hospitalized patients in a cancer center, and no other measuring instruments were used. Additional larger studies for administration in clinical practice are needed to further validate the current findings in the future.

Translation and cultural adaptation of the VHNSS 2.0 tool into Chinese (Mainland China) has been successfully performed in this study, revealing its use as an important tool to assess oral symptoms in HNC patients in China. Our results demonstrated that the Chinese version of the VHNSS 2.0 tool is equivalent to the original tool in English. The translation is easily understood by patients and adapted to Chinese culture. It is hoped that it can offer help for Chinese clinicians and researchers to evaluate oral alterations in a timely manner and develop strategies to manage such changes.