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Lookup NU author(s): Dr Izzy Williams
This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).
© 2026 The Author(s). Muscle & Nerve published by Wiley Periodicals LLC. Introduction: Weight loss in people with amyotrophic lateral sclerosis (pwALS) is a poor prognostic factor. We aimed to develop an intervention to support pwALS to increase calorie intake and explore feasibility and acceptability. Methods: Intervention development was underpinned by the Capability, Opportunity and Motivation (COM-B) model and Person Based Approach (PBA). Phase 1: healthcare professional (HCP) focus groups (n = 47), national survey (n = 281), mapping review and National Health Service (NHS) organization Freedom of Information requests (n = 251) charted current nutritional support. Systematic reviews of correlates (65 studies) and interventions supporting nutritional behaviors (14 studies), and interviews/focus groups with pwALS (n = 18), carers (n = 18) and HCPs (n = 51) identified barriers/facilitators. Phase 2: Think Aloud interviews (verbalizing thoughts whilst using the intervention) with pwALS (n = 12), carers (n = 10) and HCPs (n = 10). Phase 3: three pilot cycles, interviews with pwALS (n = 9), carers (n = 6) and HCPs (n = 5). Results: Limited evidence-based nutritional guidelines, late dietetic referral post-diagnosis, little HCP training, and few effective interventions were identified. Key facilitators/barriers included capabilities (physical ability), opportunities (social support), and motivations (dietary beliefs). The intervention was developed and piloted to refine content, presentation, and functionality. Concerns around high calorie diets and increasing intake were addressed. The final intervention comprises: (1) interventionist training, (2) calorie target setting, (3) food diaries, (4) feedback provision, (5) online resources, and (6) oral nutritional supplements. User feedback indicates high usability, acceptability, and feasibility. Discussion: The theoretically grounded intervention targets calorie intake through tailored behavior change techniques to support dieticians in practice to deliver personalized care and oral nutritional support for pwALS.
Author(s): Griffiths AW, White S, Norman P, Coates E, Hartley H, Williams IA, Halliday V, Beever D, Hackney G, Stavroulakis T, Al-Chalabi A, White D, Scott E, Cooper C, Cade J, Turner M, Shaw P, Wilson I, Dodd J, Carne A, Roberts N, Young T, Keetharuth AD, McDermott C
Publication type: Article
Publication status: Published
Journal: Muscle and Nerve
Year: 2026
Pages: Epub ahead of print
Online publication date: 07/05/2026
Acceptance date: 02/05/2026
Date deposited: 26/05/2026
ISSN (print): 0148-639X
ISSN (electronic): 1097-4598
Publisher: John Wiley and Sons Inc.
URL: https://doi.org/10.1002/mus.70269
DOI: 10.1002/mus.70269
Data Access Statement: The data that support the findings of this study are available from the corresponding author upon reasonable request.
PubMed id: 42093345
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