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

Area of Science:

• Neurology
• Clinical Nutrition
• Health Services Research

Background:

• Amyotrophic lateral sclerosis (ALS) presents challenges in maintaining adequate calorie intake.
• Optimizing nutrition is crucial for managing ALS progression and quality of life.
• A novel intervention was developed to address calorie intake in ALS patients.

Purpose of the Study:

• To evaluate the intervention fidelity and user experiences of a new calorie intake optimization intervention for ALS patients.
• To assess the feasibility and acceptability of the intervention in a real-world clinical setting.

Main Methods:

• A mixed-methods process evaluation was conducted alongside a randomized controlled trial in 15 UK ALS specialist centers.
• Data included fidelity checklists (n=146), intervention session recordings, and qualitative interviews with healthcare professionals (HCPs), patients, and caregivers (n=32).

Main Results:

• High intervention fidelity (88%) was observed.
• HCPs, patients, and caregivers recognized the intervention's value and engaged with it.
• Patients were motivated by perceived disease slowing and sense of control, despite challenges like weight gain concerns and physical limitations. Caregiver support was vital for adherence.

Conclusions:

• The intervention is feasible and delivered with high fidelity.
• Patient engagement was strong, but usability may be limited by declining physical function.
• The intervention may be best suited for slower-progressing ALS; further evaluation on effectiveness and subgroup differences is needed.