Medical nutrition therapy for ALS: Dietitians' approaches to diagnosing malnutrition, facilitating feeding tube discussions, and mitigating refeeding syndrome risk.

BACKGROUND

Persons living with amyotrophic lateral sclerosis (PALS) are at high risk for malnutrition because of disease-related factors such as dysphagia, self-feeding difficulty, and hypermetabolism. Nutrition interventions, including enteral nutrition (EN) initiation after gastrostomy tube (G-tube) placement, are integral to care but can introduce challenges, such as refeeding syndrome. This qualitative analysis explores how registered dietitians (RDs) at US-based outpatient amyotrophic lateral sclerosis (ALS) clinics assess malnutrition, facilitate discussions around G-tube placement, and mitigate refeeding syndrome risk.

METHODS

Six focus groups were conducted with 22 RDs from US ALS clinics. Audio files were transcribed verbatim, and data analyzed by deductive thematic analysis.

RESULTS

RDs reported widespread use of the Academy of Nutrition and Dietetics/American Society for Parenteral and Enteral Nutrition indicators for diagnosing malnutrition, with some using the Global Leadership Initiative on Malnutrition criteria. However, RDs described limitations in using these tools for PALS, particularly in differentiating disease-related from malnutrition-related muscle loss. When discussing G-tube placement, RDs described themselves as key informants in multidisciplinary teams, with timing of counseling typically based on symptoms and clinical progression. For refeeding syndrome, most clinics lacked formal protocols, although RDs used preventative practices, including slow initiation and advancement of EN and proactive communication with the care team.

CONCLUSIONS

ALS RDs play a critical and multifaceted role in managing nutrition-related ALS care. There is a need for ALS-specific malnutrition criteria and standard protocols to manage refeeding syndrome in the outpatient setting. RDs' involvement in G-tube discussions underscores their role in supporting patients in medical decision-making.