The nutritional management of people living with amyotrophic lateral sclerosis: A national survey of dietitians

Sean White, Nicolò Zarotti, Daniel Beever, Mike Bradburn, Paul Norman, Elizabeth Coates, Theocharis Stavroulakis, David White, Alexander McGeachan, Isobel Williams, Gemma Hackney, Vanessa Halliday, Christopher McDermott, on behalf of the HighCALS group

Research output: Contribution to journalArticlepeer-review

5 Citations (Scopus)

Abstract

Background: People living with amyotrophic lateral sclerosis (ALS) face many challenges with respect 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 regard to 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 the present study.  Results: In total, 130 dietitians responded to the survey. Two-thirds reported that ALS comprised less than 20% of their total patient caseload. Forty-two percent reported that nutritional screening took place in their organisation. One-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 patient’s body mass index was 18.5–25 kg m−2 (72%), 25–30 kg m−2 (98%), and > 30 kg m−2 (79%). In addition, 43% reported that people with ALS were not weighed sufficiently frequently.  Conclusions: Although 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.
Original languageEnglish
Pages (from-to)1064-1071
Number of pages8
JournalJournal of Human Nutrition and Dietetics
Volume34
Issue number6
Early online date24 Apr 2021
DOIs
Publication statusPublished - Dec 2021

Keywords

  • amyotrophic lateral sclerosis
  • motor neurone disease
  • nutrition support
  • nutritional assessment
  • nutritional interventions
  • malnutrition

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