Understanding patients’ experiences and needs around decision-making for bulbar symptom management at a multidisciplinary ALS clinic

PURPOSE: This study explored the decision-making experiences of people living with amyotrophic lateral sclerosis (ALS) for managing bulbar symptoms and their perceived needs for decision-making support from healthcare professionals. METHODS: An interpretive, descriptive qualitative study was conducted. We recruited adult patients with ALS with and without any bulbar symptoms from a multidisciplinary ALS clinic in Central Canada. Patients were interviewed using a semi-structured guide. Reflexive thematic analysis was used to analyze study data. Recruitment ceased when information power was reached. RESULTS: Twelve participants were interviewed. Three themes were identified for patient's decision-making experiences and needs: (1) Disease uncertainty hinders decision-making; (2) Quality information triggers decision-making; and (3) Personal values and beliefs inform decision-making. CONCLUSIONS: To reduce psychological consequences of disease uncertainty and complexity on bulbar-related decision-making, patients emphasized the need for specific and contextualized information and healthcare professional supports aligned with their decision-making styles and approaches, highlighting the importance of a person- and family-centred approach to ALS care.