Current practices in the nutrition management of people with amyotrophic lateral sclerosis (ALS): a survey of U.S. ALS care teams

Abstract

Objective

To assess current practices of U.S. professionals providing outpatient ALS nutrition care.

Methods

A cross-sectional survey assessing nutrition care practices was distributed in February/March 2023 through electronic mailing lists of relevant professional organizations.

Results

Of the 87 professionals completing the survey, 85.1% were registered dietitians and 50.6% had five or fewer years of experience in ALS care. Many (44.2%) professionals reported receiving no training on the nutrition care of people with ALS (PALS), and 40.2% reported having no other ALS dietitians in their close network. Methods utilized to estimate calorie and protein requirements in PALS varied widely. Although 95.4% of respondents reported that their clinic’s dietitian participates in feeding tube discussions, many practitioners may be waiting until ALS symptoms negatively impact PALS’ breathing, eating, swallowing, or weight to begin discussing feeding tubes. Additionally, few professionals reported institutional practices conducive for refeeding syndrome prevention or monitoring.

Conclusions

Many professionals providing outpatient nutrition care to PALS possess limited experience, received insufficient training, and are not connected to other ALS dietitians. Specific nutrition care practices, including nutrient need estimation, vary widely among health professionals. Practices surrounding feeding tube discussions and refeeding syndrome may be suboptimal at many institutions. These findings highlight the need for initiatives that educate and connect practitioners providing nutrition care to PALS.

Keywords:

• Nutrition
• dietitian
• ALS

Acknowledgements

We are grateful for all of the health care practitioners caring for people living with ALS whose participation in this survey provided the data to make this work possible.

Declaration of interest

KP has no conflicts to disclose. SD has received honoraria from Functional Formularies and served as the executive coordinator of the Dietitians in Nutrition Support Dietetic Practice Group of the Academy of Nutrition and Dietetics during the time of this research project.

Data availability statement

The data from this study are available from the corresponding author, KP, upon reasonable request.

Additional information

Funding

This work was supported by a research grant from the Dietitians in Nutrition Support Dietetic Practice Group of the Academy of Nutrition and Dietetics and the Farber Family Foundation.