Relatively little attention has been paid to this topic. The current study is the second step in our qualitative research by exploring HNC patients’ preferences and views on receiving prognostic information. In 94% qualitative prognostic information was provided, by using words such as “curable” and “good prospect”. We found that in only 6% of the consultations doctors provided quantitative prognostic information, by discussing numbers, such as percentages. We recently published the results of a qualitative research, focusing on treatment discussions among HNC patients and their doctors. 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. Patients need to be well-informed before they can be actively involved in treatment decisions. This is in line with the increased attention for shared decision making (SDM). More recently the focus has shifted more in-depth to what information to provide, and how to do this. Previous research focused on whether or not to disclose the prognosis. Therefore adequate counseling of patients including prognostic information can be of great importance. This often results in a delicate balance between survival benefit and the functional, and psychosocial disabilities a patient is willing to accept after treatment. 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). In addition, patients often face psychosocial problems and experience body image dissatisfaction as a result of the mutilating procedures. ![]() Treatment is often invasive and interferes with vital functions such as breathing, swallowing, and speech. ![]() Head and Neck cancer (HNC) is an aggressive type of cancer characterized by significant mortality and morbidity. A clinical practice guideline was developed to support professionals in sharing prognostic information, aiming to improve shared decision making and patient-centered care. A tailor-made approach is necessary to provide customized prognostic information. While most patients were enough reassured by qualitative prognostic information, some wanted to receive quantitative information like OncologIQs’ estimates. The participants found it important to receive information on their life-expectancy. The pie chart was the most preferred chart for discussing survival rates. Prognostic information should also include information on the expected QoL. They had a stronger preference for receiving prognostic information in case of a poor prognosis. 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. Disclosing qualitative prognostic information like “the cancer is curable” would give enough reassurance for most patients. While all patients considered it somewhat to very important to receive information about their life-expectancy, only some of them wanted to receive quantitative information. Themes were derived using content analysis. All focus groups were recorded, transcribed and coded. The interview guide consisted of two main topics: life-expectancy and the prognostic model OncologIQ. The patients’ perspective was the main focus. We 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 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. 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). Therefore, including prognostic information during patient counseling can be of great importance. Treatment is often invasive and interferes with vital functions, resulting in a delicate balance between survival benefit and deterioration in quality of life (QoL). Head and Neck cancer (HNC) is characterized by significant mortality and morbidity.
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