Personalizing nutritional care in amyotrophic lateral sclerosis (ALS): a multi-perspective qualitative focus group study of experiences and challenges

Background: Proactive, timely nutritional care is important for people living with amyotrophic lateral sclerosis (plwALS), as weight loss and malnutrition are associated with faster disease progression and shorter survival. However, previous studies have shown that there is considerable practice variation in nutritional care, and that care is not always delivered proactively. Objectives: To gain insight into how healthcare professionals (HCPs), plwALS and their primary caregiver experience nutritional care. Methods: A generic qualitative study was conducted using semi-structured focus group discussions. Five focus group discussions were organized: two with HCPs and three with plwALS and their primary caregivers. Data were transcribed verbatim and analyzed inductively using thematic analysis. Results: In total, 14 HCPs, 19 plwALS, and three primary caregivers participated. Analyses resulted in four major themes: (1) A gap between knowing and acting, (2) balancing providing and withholding care, (3) sufficiently informed to participate in shared decision-making? and (4) opportunities for improvement. Conclusion: Findings suggest that improving nutritional care in ALS requires clear and transparent communication to ensure that plwALS and caregivers are well-informed about the importance of nutrition and monitoring of nutritional status, and more involved in clinical decision-making. Clear explanations about the dietitian’s role and nutritional care process may improve patient engagement and facilitate shared decision-making.