Related Experiment Video
Updated: May 8, 2026
12:43
A Protocol for Comprehensive Assessment of Bulbar Dysfunction in Amyotrophic Lateral Sclerosis (ALS)
Published on: February 21, 2011
Development of a Complex Intervention to Support High Calorie Diets for People With Amyotrophic Lateral Sclerosis
Alys Wyn Griffiths1,2, Sean White1,2, Paul Norman3
1Sheffield Institute for Translational Neuroscience, University of Sheffield, Sheffield, UK.
Muscle & Nerve
|May 7, 2026
Summary
This study developed a new intervention to help people with amyotrophic lateral sclerosis (pwALS) increase calorie intake, addressing weight loss. The intervention proved feasible and acceptable for pwALS and healthcare professionals.
Area of Science:
- Neurology
- Nutrition Science
- Behavioral Science
Background:
- Weight loss is a significant negative prognostic indicator for people with amyotrophic lateral sclerosis (pwALS).
- Current nutritional support for pwALS is often limited by a lack of evidence-based guidelines and delayed access to dietetic services.
- Healthcare professional training and effective interventions for nutritional support in pwALS are scarce.
Purpose of the Study:
- To develop and evaluate the feasibility and acceptability of a novel intervention designed to increase calorie intake in pwALS.
- To identify key barriers and facilitators to nutritional support for pwALS using a comprehensive, theory-based approach.
Main Methods:
- The intervention was developed using the Capability, Opportunity, and Motivation (COM-B) model and a Person-Based Approach (PBA).
- Multiple phases involved healthcare professional (HCP) focus groups, national surveys, systematic reviews, and interviews with pwALS, carers, and HCPs.
- Pilot testing and Think Aloud interviews were conducted to refine the intervention's content, presentation, and functionality.
Main Results:
- Identified barriers included physical capabilities, social opportunities, and dietary beliefs, alongside limited evidence-based guidelines and HCP training.
- The developed intervention integrates HCP training, calorie target setting, food diaries, feedback, online resources, and oral nutritional supplements.
- User feedback highlighted the intervention's high usability, acceptability, and feasibility for supporting pwALS.
Conclusions:
- A theoretically grounded intervention was successfully developed and piloted to enhance calorie intake in pwALS.
- The intervention utilizes tailored behavior change techniques to support personalized care and oral nutritional support delivery by dietitians.
- This approach aims to improve nutritional management and potentially outcomes for people with amyotrophic lateral sclerosis.
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