246 | Chapter 11 swallowing, making treatment decisions complex. The aggressive nature of these cancers often necessitates combined treatments like surgery, chemotherapy, and radiation, which come with significant side effects. Understanding these treatment options can be challenging for patients, as the complexities of treatment and the high impact of side effects often lead to uncertainty. This is further compounded by socioeconomic barriers and health literacy limitations. Visible disfigurement and the psychosocial impact also add to the difficulty of decision-making, making it more challenging for this group compared to those with other cancers. However, there is a lack of research to support this. DR has been more extensively studied in our field (Chapter 2). The results are heterogeneous, and study-specific questionnaires underestimate the prevalence of DR (5-35%) compared to validated questionnaires (SSS 72-86%, DRS 14-86%). Factors like tumor location, stage, treatments, timing, and complications influence DR, but the studies did not allow clear comparisons among patient groups. Therefore, caution is needed when interpreting DR prevalence. The risk of depression is significant in HNC and you could hypothesize that it might be linked to DR12. The emotional burden of diagnosis, disfigurement, and functional impairments due to treatment can exacerbate DR. Overall, DC and DR are highly prevalent in HNC patients and warrant attention in clinical work and research. A more precise understanding of the prevalence and nuances of DC and DR in HNC patients could significantly influence counseling practices, potentially promoting SDM approaches. We observed a moderate level of SDM within our center (Chapter 3). However, our analysis revealed a notable discrepancy between perceived and observed SDM scores. This discrepancy suggests that both patients and surgeons may lack a comprehensive understanding of what SDM truly involves. Interestingly, both groups tended to perceive a higher level than what was objectively observed. Comparisons with similar research in other fields indicate that our observed SDM scores were relatively high (low levels in breastcancer13, low-moderate in hepatobiliary surgical14 and similar in vascular surgery15 and anesthesiology16). This could be due to the complexity of HNC and its significant treatment implications, which may inherently prioritize patientcentered interactions. However, there are some methodological considerations regarding these results. The SDM-Q-9 questionnaires used may not adequately capture perceived SDM, given the paradoxical results found between objective and perceived scores. If patients are unaware of what to expect, they might rate their physicians highly even when observed levels are lower. Another question that arose was: If patients rate their perceived SDM this high, do we need improvement?
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