The use of health related quality of life data to produce information sheets for patients with head and neck cancer.

INTRODUCTION: Health related quality of life information gives patients and carers an indication of how they will be affected following treatment. Such knowledge can promote realistic expectations and help patients come to terms with their outcome. The aim of this paper is to describe the background development of patient information sheets produced at our unit. METHODS: The data were compiled using a common head and neck cancer specific quality of life questionnaire (University of Washington Quality of Life [UW-QOL]). There are 12 domains comprising activity, appearance, anxiety, chewing, mood, pain, recreation, saliva, shoulder, speech, swallowing and taste. The data were collected over 19 years at our unit and focus on follow-up records at around 2 years as this gives a good indication of health related quality of life in survivorship. UW-QOL questionnaires were available from 1,511 patients treated following primary diagnosis of head and neck cancer, and there were 24 subgroups based on cancer site, stage and treatment. There were 2 other subgroups: 132 having transoral laser resection and 176 having laryngectomy. RESULTS: The patient and carer research forum helped to design the information sheets, which display overall quality of life, percentages with 'good' outcome and 'significant problem' by domain, and the most important domains. Three examples are included in this paper: early stage oral cancer treated by surgery alone, early laryngeal cancer treated by surgery alone, and late stage oropharyngeal cancer treated by surgery and postoperative radiotherapy. All 26 subgroup information sheets are available in booklet form and on the internet. CONCLUSIONS: How the surgical community best utilises this type of resource needs further research.

'What will I be like' after my diagnosis of head and neck cancer?

Consequences of treating head and neck cancer are reflected in health-related quality of life (HRQOL) patient-reported outcomes. HRQOL is an important outcome alongside survival and recurrence. However, relatively little HRQOL information is in a format that patients and oncology teams can easily interpret as a guide to likely outcomes following curative treatment. The study aim was to collate University of Washington Quality of Life (UW-QOL) questionnaires collected 1995-2012 at the Regional Head and Neck Surgical Unit with a view of summarizing key clinical-demographic influences on HRQOL outcomes at 2 years following diagnosis. Patients completing UW-QOL questionnaires at 9-60 months had their record closest to 2 years selected for cross-sectional analyses, while all questionnaires were analyzed to assess temporal trends. 65 % (1,134) of survivors to 9 months had a UW-QOL record in the cross-sectional analysis (median 23 months). Overall 1,349 completed 5,573 UW-QOL questionnaires. Various associations were seen, notably late overall clinical staging and treatment adversely associated with UW-QOL physical functioning domains. Logistic regression was used to better understand the predictive factors of UW-QOL outcome and determined the final formatting of tables for results. These tables provide important reference data about UW-QOL outcome at 2 years relevant to patients at the outset of their cancer journey. The increasing amount of HRQOL data allows for quite detailed subgroup analysis, which can help give patients and the clinical team a better understanding of likely long-term HRQOL outcomes. How this is best utilized in clinical care needs further evaluation.