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

Coates, E. and Zarotti, N. and Williams, I. and White, S. and Halliday, V. and Beever, D. and Hackney, G. and Stavroulakis, T. and White, D. and Norman, P. and McDermott, C. (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

Abstract

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