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

Objectives Research suggests that higher Body Mass Index is associated with improved survival in people with Amyotrophic Lateral Sclerosis (pwALS). Yet, understanding of the barriers and enablers to increasing calorie intake is limited. This study sought to explore these issues from the perspective...

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Bibliographic Details
Published in:Chronic illness 2023-06, Vol.19 (2), p.368-382
Main Authors: Coates, Elizabeth, Zarotti, Nicolò, Williams, Isobel, White, Sean, Halliday, Vanessa, Beever, Daniel, Hackney, Gemma, Stavroulakis, Theocharis, White, David, Norman, Paul, McDermott, Christopher
Format: Article
Language:English
Subjects:
Amyotrophic Lateral Sclerosis
Body mass index
Calories
Caregivers
Delivery of Health Care
Eating behavior
Energy Intake
Habits
Health care
Health Personnel - psychology
Healthy food
Humans
Influence
Medical personnel
Motivation
Motor neurone disease
Physical symptoms
Qualitative Research
Sense of control
Social factors
Symptoms
Treatment preferences
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Summary:Objectives Research suggests that higher Body Mass Index is associated with improved survival in people with Amyotrophic Lateral Sclerosis (pwALS). Yet, understanding of the barriers and enablers to increasing calorie intake is limited. This study sought to explore these issues from the perspective of pwALS, informal carers, and healthcare professionals. Methods Interviews with 18 pwALS and 16 informal carers, and focus groups with 51 healthcare professionals. Data were analysed using template analysis and mapped to the COM-B model and Theoretical Domains Framework (TDF). Results All three COM-B components (Capability, Opportunity and Motivation) are important to achieving high calorie diets in pwALS. Eleven TDF domains were identified: Physical skills (ALS symptoms); Knowledge (about high calorie diets and healthy eating); Memory, attention, and decision processes (reflecting cognitive difficulties); Environmental context/resources (availability of informal and formal carers); Social influences (social aspects of eating); Beliefs about consequences (healthy eating vs. high calorie diets); Identity (interest in health lifestyles); Goals (sense of control); Reinforcement (eating habits); and Optimism and Emotion (low mood, poor appetite). Discussion To promote high calorie diets for pwALS, greater clarity around the rationale and content of recommended diets is needed. Interventions should be tailored to patient symptoms, preferences, motivations, and opportunities.
ISSN:1742-3953
1745-9206
DOI:10.1177/17423953211069090