Factors Impacting Tracheostomy Decisions in Korean Individuals With Amyotrophic Lateral Sclerosis: A Cross-Sectional...

Decisions regarding tracheostomy are often made under emergent circumstances, although they require complex considerations of patient preferences, quality of life, and prognosis. This study investigated decision-making surrounding tracheostomy in Korean people with amyotrophic lateral sclerosis (pwALS) and factors influencing these decisions.

Eighty participants were recruited from the Korean ALS Association and categorized into those who underwent tracheostomy-invasive ventilation (TIV) and those who did not. Participants completed the Hospital Anxiety and Depression Scale (HADS), the Decisional Conflict Scale (DCS), and the Control Preference Scale (CPS), as well as 27 modified questions from the Columbia University TIV study assessing demographics, disease characteristics, preferences, and reasons for undergoing or declining tracheostomy.

Forty-two patients underwent TIV. The TIV and non-TIV groups were similar in age and sex, whereas disease duration was longer in the TIV group. Among those in the non-TIV group, King's stage 4a was the most frequent (n = 13). Fourteen patients (33%) who underwent TIV reported that they received information about tracheostomy at the time of the procedure, whereas 22 patients in the non-TIV group (58%) reported no prior discussion. DCS and HADS scores did not differ significantly between groups; however, high decisional conflict (DCS ≥ 25) was associated with higher HADS scores.

Tracheostomy decision-making among Korean pwALS is frequently crisis-driven, limiting opportunities for advance discussion. Timely and structured discussions about end-of-life care are essential for supporting informed, preference-aligned decisions and reducing psychological burden. Using simple, validated questionnaires may help identify decisional uncertainty and clarify patients' preferred roles in decision-making.