Abstract
BackgroundHead and Neck cancer (HNC) is characterized by significant mortality and morbidity. Treatment is often invasive and interferes with vital functions, resulting in a delicate balance between survival benefit and deterioration in quality of life (QoL). Therefore, including prognostic information during patient counseling can be of great importance. The first aim of this study was to explore HNC patients’ preferences for receiving prognostic information: both qualitative (general terms like “curable cancer”), and quantitative information (numbers, percentages). The second aim of this study was to explore patients’ views on “OncologIQ”, a prognostic model developed to estimate overall survival in newly diagnosed HNC patients.MethodsWe conducted a single center qualitative study by organizing five focus groups with HNC patients (n = 21) and their caregivers (n = 19), categorized in: 1) small laryngeal carcinomas treated with radiotherapy or laser, 2) extensive oral cavity procedures, 3) total laryngectomy, 4) chemoradiation, 5) other treatments. The patients’ perspective was the main focus. The interview guide consisted of two main topics: life-expectancy and the prognostic model OncologIQ. All focus groups were recorded, transcribed and coded. Themes were derived using content analysis.ResultsWhile all patients considered it somewhat to very important to receive information about their life-expectancy, only some of them wanted to receive quantitative information. Disclosing qualitative prognostic information like “the cancer is curable” would give enough reassurance for most patients. Overall, patients thought life-expectancy should not be discussed shortly after cancer diagnosis disclosure, as a certain time is needed to process the first shock. They had a stronger preference for receiving prognostic information in case of a poor prognosis. Prognostic information should also include information on the expected QoL. The pie chart was the most preferred chart for discussing survival rates.ConclusionsThe participants found it important to receive information on their life-expectancy. While most patients were enough reassured by qualitative prognostic information, some wanted to receive quantitative information like OncologIQs’ estimates. A tailor-made approach is necessary to provide customized prognostic information. A clinical practice guideline was developed to support professionals in sharing prognostic information, aiming to improve shared decision making and patient-centered care.
Highlights
Head and Neck cancer (HNC) is characterized by significant mortality and morbidity
Head and Neck cancer (HNC) is an aggressive type of cancer characterized by significant mortality and morbidity [1,2,3,4]
This often results in a delicate balance between survival benefit and the functional, and psychosocial disabilities a patient is willing to accept after treatment
Summary
Treatment is often invasive and interferes with vital functions, resulting in a delicate balance between survival benefit and deterioration in quality of life (QoL). On the one hand physicians aim for cure and prolonging life, while on the other hand they strive for optimization of quality of life (QoL) This often results in a delicate balance between survival benefit and the functional, and psychosocial disabilities a patient is willing to accept after treatment. More recently the focus has shifted more in-depth to what information to provide, and how to do this [6,7,8] This is in line with the increased attention for shared decision making (SDM). As patients may not be able to make well-informed treatment decisions without understanding their prognosis, providing prognostic information is a key factor in SDM
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