Summary | 261 12 12.1 English summary This dissertation consists of two parts, focusing on different aspects of care for head and neck cancer (HNC). The first part addresses shared decision-making (SDM), particularly in advanced laryngeal cancer and early stage oropharyngeal cancer where primary curative surgery and radiation are both options. The second part focuses on various tools used in the rehabilitation of patients after a total laryngectomy (TL), aiming to improve outcomes for TL patients. Chapter 1 is a general introduction that provides background on head and neck cancer, specifically laryngeal and oropharyngeal cancer. It discusses the complexity of decision-making, the importance of a multidisciplinary approach, and the impact of the disease on patients’ lives. The need for shared decision-making (SDM) and the role of patient decision aids (PDAs) are emphasized to support patients in their treatment choices. The second part highlights the necessity of specialized rehabilitation after a total laryngectomy, focusing on voice prostheses (VP) and Heat and Moisture Exchangers (HME). VPs enable patients to learn to speak again, although their limited lifespan leads to unplanned hospital visits for VP replacement. HMEs warm and humidify the airway, reducing pulmonary complaints, but their fixed resistance can cause breathing difficulties during intensive activities, leading to limited use. Part 1: Shared Decision Making in Head and Neck Cancer Chapter 2 is a systematic review with meta-analysis that examines the current literature on the prevalence of decisional conflict (DC) and decisional regret (DR) in HNC patients. The findings indicate that DC and DR are significant issues for a large percentage of patients. Despite the limited number of studies and variability in patient groups, tumor locations, stages, and questionnaires used, it is clear that DC and DR are prevalent among HNC patients. These findings highlight the urgent need for improved counseling strategies and decision aids to support patients in making informed treatment choices. The review underscores the importance of addressing these psychological factors to enhance patient outcomes and satisfaction with their treatment decisions. In Chapter 3, the current state of observed and perceived SDM among head and neck surgeons, patients, and their relatives within our own institution was investigated. We measured perceived levels of SDM and patient involvement using questionnaires and analyzed observed SDM by studying audiotaped consultations. Our results showed that surgeons and patients overestimate the extent of SDM compared to actual observations. Despite high perceived SDM scores, observed scores were moderate.
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