The nutritional management of people living with Amyotrophic Lateral Sclerosis (ALS): A national survey of dietitians

Background

People living with Amyotrophic Lateral Sclerosis (ALS) face many challenges to taking adequate nutrition. Growing evidence links weight loss with negative prognostic outcomes. We aimed to explore the practice of dietitians in the UK with regards the nutritional management of ALS.

Methods

A national online survey was disseminated via professional groups, social media, and newsletters to UK healthcare professionals, between September and November 2018. The survey examined the nutritional management of ALS. Dietitian responses are reported in this paper.

Results

In total, 130 dietitians responded to the survey. Two thirds reported that ALS comprised less than a 20% of their total patient caseload. Fourty two percent reported that nutritional screening took place in their organisation. Half of dietitians reported that patients were referred for dietetic assessment at ‘about the right time’ although 44% reported referrals were made too late. The majority (83%) of dietitians used resting energy expenditure predictive equations not validated in ALS. When setting weight goals, dietitians reported most frequently recommending weight maintenance if the patients BMI was 18.5‐25kg/m2 (72%), 25‐30kg/m2 (98%), and over 30kg/m2 (79%). In addition, 43% reported that people with ALS were not weighed frequently enough.

Conclusions

While the importance of early nutritional assessment is recognised, the timeliness of dietetic input and on‐going monitoring of nutritional status in ALS care might not currently be ideal. Dietitians report using energy requirement predictive equations and setting weight goals that may not promote positive outcomes. Further research is required to understand the optimal nutritional management of ALS.