Optimising Calorie Intake for People With Amyotrophic Lateral Sclerosis: A Process Evaluation of a Complex Behaviour Change Intervention.

Objective: To explore intervention fidelity and experiences of using a new intervention designed to optimise calorie intake in people with amyotrophic lateral sclerosis (ALS). Methods: A mixed‐methods process evaluation was conducted alongside an ongoing randomised controlled trial across 15 ALS spe...

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Publicado en:Health Expectations Vol. 28; no. 5; pp. 1 - 11
Autores principales: Hullock, Katie, O'Cathain, Alicia, Sampson, Fiona, Woodward, Jonathan, Coates, Elizabeth, Stavroulakis, Theocharis, White, Sean M., White, David, Norman, Paul, McDermott, Christopher
Formato: research tables/charts Journal Article
Publicado: Wiley-Blackwell Oct2025
Acceso en línea:Ver este registro en EBSCOhost
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      dt: Oct2025
      vid: 28
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      pub: Wiley-Blackwell
      place: Malden, Massachusetts
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        atl: Optimising Calorie Intake for People With Amyotrophic Lateral Sclerosis: A Process Evaluation of a Complex Behaviour Change Intervention.
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          Hullock, Katie
          O'Cathain, Alicia
          Sampson, Fiona
          Woodward, Jonathan
          Coates, Elizabeth
          Stavroulakis, Theocharis
          White, Sean M.
          White, David
          Norman, Paul
          McDermott, Christopher
        affil: Sheffield Clinical Trials Research Unit (CTRU), Sheffield Centre for Health and Related Research, The University of Sheffield, Sheffield, UK
      sug:
        subj:
          Amyotrophic Lateral Sclerosis Diet Therapy
          Energy Intake
          Internet-Based Intervention
          Behavioral Changes
          Nutrition Education
          United Kingdom
          Funding Source
          Human
          Multimethod Studies
          Checklists
          Audiorecording
          Semi-Structured Interview
          Health Personnel
          Caregivers
          Inpatients
          Descriptive Statistics
          Motivation
          Patient Attitudes
          Disease Progression Prevention and Control
          Sense of Agency
          Weight Gain
          Cooking
          Food Intake
          Caregiver Support
          Family Role
          Patient Compliance
          Digital Health
          Thematic Analysis
          Adult
          Middle Age
          Aged
          Aged, 80 and Over
          Adult: 19-44 years
          Middle Aged: 45-64 years
          Aged: 65+ years
          Aged, 80 & over
      ab: Objective: To explore intervention fidelity and experiences of using a new intervention designed to optimise calorie intake in people with amyotrophic lateral sclerosis (ALS). Methods: A mixed‐methods process evaluation was conducted alongside an ongoing randomised controlled trial across 15 ALS specialist centres in the United Kingdom. Data collection included 146 healthcare professional‐completed fidelity checklists, audio recordings of 5 intervention sessions, and qualitative interviews with 32 healthcare professionals, patients and informal caregivers. Results: Intervention fidelity was high (88%: 1059/1204 items completed by healthcare professionals). Healthcare professionals, patients and informal caregivers within the sample recognised the intervention's value and engaged with it. Patients were motivated to use the intervention because they believed it could slow disease progression, and it gave them a sense of control. Despite challenges with the intervention, including patient concerns about weight gain and physical limitations in food preparation and consumption, patients in this sample remained committed to using the intervention. However, healthcare professionals suggested that these challenges may have negatively influenced trial recruitment and retention. Caregivers played a crucial role in supporting patients emotionally and physically, helping them to adhere to the intervention. Conclusions: The intervention was feasible to implement and was delivered with fidelity. While patient engagement in this sample was strong, the intervention usability may be time‐limited as physical function declines. Therefore, the intervention may be best suited for those with slower‐progressing ALS who can manage the intervention and dietary changes. Moving forward, continued evaluation is needed to assess effectiveness and explore subgroup differences based on ALS type (slow vs. fast progressing). PPIE Contribution: PPI was integral to the process evaluation. PPI members reviewed key study documents, including the Participant Information Sheet and consent forms, leading to participant materials that were clear and easily understood. They also participated in developing the intervention. Trial Registration: IRAS ID 275949, ISRCTN30588041.
      pubtype: Academic Journal
      doctype:
        research
        tables/charts
        Journal Article
      ougenre: Article
    language: English
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