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

Coates, Elizabeth, Zarotti, Nicolò, Williams, Isobel, White, Sean, Halliday, Vanessa, Beever, Daniel, Hackney, Gemma, Stavroulakis, Theocharis, White, David, Norman, Paul and McDermott, Christopher and on behalf of the HighCALS group (2023) Patient, carer and healthcare professional perspectives on increasing calorie intake in Amyotrophic Lateral Sclerosis. Chronic Illness, 19 (2). pp. 368-382. ISSN 1742-3953

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ObjectivesResearch 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.MethodsInterviews 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).ResultsAll 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).DiscussionTo 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

Item Type: Article
Additional Information: Funding Information: This project is funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research (Grant Reference Number RP-PG-1016-20006) and supported by the NIHR Sheffield Biomedical Research Centre. The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.
Uncontrolled Keywords: amyotrophic lateral sclerosis,motor neuron disease,dietetics,qualitative research,behaviour change,health policy ,/dk/atira/pure/subjectarea/asjc/2700/2719
Faculty \ School: Faculty of Medicine and Health Sciences > Norwich Medical School
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Depositing User: LivePure Connector
Date Deposited: 23 May 2023 13:30
Last Modified: 30 May 2023 09:30
DOI: 10.1177/17423953211069090

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