Registered Dietitians' perspectives on nutrition management of persons living with amyotrophic lateral sclerosis.

AIM: Persons with amyotrophic lateral sclerosis (PALS) are at high risk for malnutrition, which is a negative prognostic factor for disease progression and survival. This study explored the perspectives of Registered Dietitians (RDs) providing nutrition care to PALS, focusing on barriers and facilitators to optimal patient care.

METHODS

RDs from U.S. multidisciplinary ALS clinics participated in six virtual focus groups. Recordings were transcribed verbatim and independently coded by two researchers for deductive content analysis.

RESULTS

RDs highlighted the importance of using clinical judgment to assess nutrition status and individualizing recommendations to respect patient autonomy. The multidisciplinary team model was identified as a strong facilitator to optimal patient care, while insurance coverage for nutrition-related supplies was a common barrier. RDs reported having little prior knowledge of ALS before assuming their current roles and described the need to upskill through self-teaching and on-the-job experience.

CONCLUSIONS

Results emphasize the importance of clinical judgment with respect to patient autonomy in providing nutrition care to PALS. The barriers and facilitators identified across multiple levels provide insight for future interventions to improve patient care.