Discussion | 245 11 Part 1: Shared Decision Making in Head and Neck Oncology Head and neck cancer (HNC) often needs drastic and complex treatments, affecting patients’ quality of life. Complex treatment choices, like balancing survival and organ preservation or equally effective options, are preference-sensitive, putting patients at risk of decision conflict (DC)1,2. DC is the uncertainty experienced when making a difficult decision due to feeling uninformed or conflicted about outcomes, and has many negative consequences, such as delay in decision-making, making treatment choices that are not in line with patients’ preferences, and decisional regret3,4. Decisional regret (DR) is a negative feeling associated with grief, disappointment, or distress following a decision regarding healthcare. Our systematic review regarding the prevalence of DC and DR in HNC patients (Chapter 2) showed that there is limited research performed regarding this topic, only 28 studies were performed between 1987 and 2022, with more studies later in years. In most studies, DC and DR were secondary outcomes and studies were quite heterogeneous on multiple fronts. The fact that most studies used it as secondary outcomes shows that clinicians and researchers have prioritized other primary outcomes. Especially results on DC were lacking, making it hard to draw conclusions, although we did see that 25-50% of the HNC patients did experience DC and qualitative research showed that stress of diagnosis and lack of clear information regarding disease, treatments, and their impact, led to a high level of DC in most patients. We investigated DC in patients with advanced laryngeal cancer (Chapter 4) and found that nearly all patient experienced clinically significant levels of DC. We examined the effect of a PDA on DC among these patients (Chapter 5). The PDA improved knowledge levels and perceived SDM, leading to a significant reduction in overall decisional conflict scores, indicative of improved decision-making. Despite these gains, the proportion of patients experiencing clinically significant DC remained high and was similar across groups, highlighting the complexities involved in decision-making for this patient population. We found higher levels of DC, than we found in our SR. This may be attributed to the specific stage and type of HNC, as well as the fact that this study focused on this primary outcome and was specifically powered for it. In contrast, other studies treated it as a secondary outcome and often included mixed groups of tumor types and stages. Additionally, cultural factors and timing could also play a role5,6. When looking at other tumor types, our found prevalence of CSDC is much higher compared to for example breast cancer (16-68%7,8) and prostate cancer (46-639,10). Although also in these studies data is hard to compare due to heterogeneity in tumor stage and treatment possibilities. It is assumable that tumor stage influences the level of DC, although we do not have research to prove this. But looking at those numbers, we can also state that HNC definitely has higher scores compared to other tumor types, and way higher than in primary care (10-31%11). How can we explain this? One could hypothesize that this is due to the critical functions affected, like speech and
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