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

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.

Delivery of nutritional management services to people with amyotrophic lateral sclerosis (ALS)

“…Taking a MDT approach was highlighted in this study as being central to coordinated health services, the benefits of which are known to positively impact on the quality of care and subsequent outcomes for pwALS ( 20–22 ). Although findings from our study suggest that the majority of organizations have an ALS MDT, the configuration and function varies.…”

A critical view of the use of predictive energy equations for the identification of hypermetabolism in motor neuron disease

“…The inclusion of the Henry equation in this study was informed by the results of a recent large UK-wide survey of dietetic practice in MND (22). The accuracy of the Henry equation when compared to mREE has not been previously assessed in MND.…”

“…However, indirect calorimetry may be costly, time consuming and not readily available in all clinical contexts (21). When it is not possible to perform indirect calorimetry, REE is predicted (pREE) using predictive energy equations (22). The Henry equation ( 23) is reported to be the most commonly utilised predictive energy equation by dietitians caring for plwMND in the UK (22).…”

Patient, carer and healthcare professional perspectives on increasing calorie intake in Amyotrophic Lateral Sclerosis

“…In addition, previous research on nutrition in ALS has mostly focussed on problems resulting from dysphagia 11 or enteral feeding, 12 as opposed to addressing issues with oral nutritional interventions ('food first approach') which typically comes before enteral feeding. 13 One qualitative study has investigated psychosocial issues related to dysphagia for pwALS from the caregiver perspective, 14 reporting how dysphagia can change mealtime experiences of caregivers and pwALS due to fear of choking, frustration with being unable to prevent weight loss, use of avoidance as a coping strategy, and a desire to maintain normality. Another qualitative study explored the psychological factors influencing nutritional management of pwALS from the HCP perspective.…”