Measuring head and neck cancer symptom burden: The development and validation of the M. D. Anderson symptom inventory, head and neck module

Background. The aim of this study was to develop and validate a symptom inventory for patients with head and neck cancer and to assess the occurrence and severity of symptoms, the overall symptom burden, and the interference the symptoms cause in daily life. Methods. Items were generated from a comprehensive literature review, our prior work, and focus groups with head and neck cancer patients, symptom researchers, and a multidisciplinary group of head and neck cancer health care workers. We selected 11 provisional head and neck cancer-specific items for addition to the core M. D. Anderson Symptom Inventory (MDASI), and conducted a cross-sectional validation study among patients with head and neck cancer. Results. Construct validity was established using principal axis factoring with direct oblimin rotation, and tests of concurrent and known-groups validity were conducted. Two items were dropped because of low severity scores and low frequency of complaint, leaving 9 final head and neck cancer-specific items. The coefficient a reliabilities were 0.88, 0.83, and 0.92 for the 13 core MDASI items, the 9 head and neck cancer-specific items, and the 6 interference items, respectively. The most prevalent severe symptoms were problems with mucus, mouth/throat sores, tasting food, difficulty with chewing or swallowing, dry mouth, pain, and fatigue. Conclusions. The M. D. Anderson Symptom Inventory-Head and Neck (MDASI-HN) is a reliable and valid instrument to measure head and neck cancer symptom burden, and the interference symptoms cause in the major aspects of a patient's daily life. A subset of specifically distressing symptoms was identified, many of which are not included in commonly used head and neck cancer quality of life instruments.