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

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. 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. 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. 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. What is this article about?º Persons with amyotrophic lateral sclerosis (PALS) are at high risk for becoming malnourished, and poor nutrition can accelerate disease progression and shorten survival. This study examined the experiences and perspectives of Registered Dietitians (RDs) who work with PALS to understand what helps or hinders optimal nutrition care.What were the results?º RDs said it’s important to use their professional judgment and tailor nutrition advice to each person’s needs and choices. Working as part of a multidisciplinary team of other healthcare professionals made it easier to provide better care. However, insurance coverage for nutrition supplies was often a problem.What do the results of this study mean?º Many RDs said they had little knowledge about ALS before starting their jobs, so they had to learn on their own. The study’s results provide insight into how to develop better training and support for dietitians who work with PALS. What is this article about? º Persons with amyotrophic lateral sclerosis (PALS) are at high risk for becoming malnourished, and poor nutrition can accelerate disease progression and shorten survival. This study examined the experiences and perspectives of Registered Dietitians (RDs) who work with PALS to understand what helps or hinders optimal nutrition care. What were the results? º RDs said it’s important to use their professional judgment and tailor nutrition advice to each person’s needs and choices. Working as part of a multidisciplinary team of other healthcare professionals made it easier to provide better care. However, insurance coverage for nutrition supplies was often a problem. What do the results of this study mean? º Many RDs said they had little knowledge about ALS before starting their jobs, so they had to learn on their own. The study’s results provide insight into how to develop better training and support for dietitians who work with PALS.