"The less they talk about it, the more we think about it": a qualitative interview study of the existential agency of children and young people when they are relatives of a family member dying from ca

The endoscopic endonasal transsphenoidal approach (EETSA) is a minimally invasive surgical technique for removing sellar and parasellar lesions. Its advantage is obtaining a wider view and improving the exposure to visualize the surgical field [, ]. Although this approach is less invasive, olfactory dysfunction, the most common nasal surgical complication after EETSA, may occur [, , , ]. Decreased sense of smell not only reduces the ability to recognize odors but also deprives us of a warning system that alerts us to dangers from fire or spoilt foods, thereby reducing patients' quality of life (QOL) []. Furthermore, olfactory dysfunction has been linked to depression, poorer mental health, and even increased mortality in older adults, independent of other health factors [, ]. Given these wide‐ranging impacts, comprehensive assessment of olfactory‐related QOL should be a key consideration in pre‐ and post‐operative care in patients undergoing EETSA. Traditional evaluation methods have primarily focused on psychophysical testing, using the University of Pennsylvania Smell Identification Test (UPSIT), the Cross‐Cultural Smell Identification Test (CCSIT), and Sniffin’ Sticks test [, , , , ]. However, these measures may not fully reflect the patient's real experience. For instance, studies showed that many chronic rhinosinusitis patients with normal psychophysical test results still reported significant subjective olfactory dysfunction []. Similarly, patients may experience meaningful subjective improvements in olfaction after topical steroid treatment without corresponding changes in psychophysical scores []. Therefore, subjective measures, which focus on the patient's perception of olfactory function, may better reflect its impact on QOL. The Korean version of questionnaire of olfactory disorders (QOD) is a validated tool for assessing subjective olfactory dysfunction and its impact on QOL [, ]. It comprehensively evaluates parosmia (QOD‐P), sincerity (QOD‐S), and life quality statements (QOD‐LQ), and visual analog scale statements (QOD‐VAS). However, in studies analyzing post‐EETSA olfactory dysfunction, olfactory‐related QOL has often been overlooked. Despite its utility, previous studies analyzing post‐EETSA olfactory function have often relied on simpler assessment tools like the Sino‐Nasal Outcome Test (SNOT‐22), VAS, or a single question on the sense of smell [, , , , , ]. While some studies reported no significant changes in subjective olfaction [], others found that postoperative subjective olfactory dysfunction occurred in 18%–37% of patients [, , , ]. Because these questionnaires are simple and single questions about olfaction, they cannot accurately reflect olfactory‐related QOL. Therefore, for patients undergoing EETSA, there is a need to assess olfactory‐related QOL using more detailed and reliable questionnaires such as the QOD.