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

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.

Appetite and quality of life in amyotrophic lateral sclerosis: A scoping review

“…Seven studies of appetite loss in ALS used nine different tools to measure surrogate markers of QoL including mood and symptom burden tools, as follows: ALSAQ‐40, 19 CBI‐R (behavior changes), 20 COM‐B (behavior changes), 23 FAACT (anorexia/cachexia), 19 HADS (mood), 5,19 NPI (mood), 20 BDI‐II (mood), 22 ESAS (general symptoms), 24 and PROMIS SF (general symptoms) 9 (Table S2). The ALSAQ‐40 was the only ALS‐specific QoL measurement tool found, used in combination with the HADS in one study 19 .…”

“…The remaining ten articles met the inclusion criteria and were eligible for data synthesis. 3,5,9,[19][20][21][22][23][24][25] The earliest publication date was 2010, 19 with most articles (n = 7, 70%) published in 2019 or more recently (Table 1). Studies originated from China (n = 2), 5,20 Germany (n = 2), 3,25 Australia (n = 1), 21 Portugal (n = 1), 24 Romania (n = 1), 22 Switzerland (n = 1), 19 United Kingdom (n = 1), 23 and the United States (n = 1).…”

“…Table 1 summarizes the general study characteristics of the included articles. 3,5,9,[19][20][21][22][23][24][25] Various study designs were used, including crosssectional studies, case-control studies, randomized controlled trials, and qualitative investigations. The median sample size in the included studies was 56, ranging from 7 to 94.…”

‘It's working together with what you've got’: Healthcare professionals' experiences of working with people with combined intellectual disability and personality disorder diagnoses

“…The main strength of the present service evaluation resides in the exploration of the subjective views of staff working with people with intellectual disability and a PD diagnosis, which represents a neglected area in the current literature. More specifically, this built on previous evidence showing that qualitative investigations involving HCPs may provide invaluable insight into clinical factors which could go overlooked in quantitative projects or studies focused solely on service users' perspectives (Coates et al, 2021; Zarotti et al, 2019).…”

“…Ultimately, this led most participants to wish they could receive further guidance and supervision in their daily clinical work, especially in the form of professional and emotional support, which are considered vital when working with people with a diagnosis of PD in general (Bland & Rossen, 2005;Moore, 2012) as well as anyone with attachment and/or personality needs (Carr et al, 2016). (Coates et al, 2021;Zarotti et al, 2019).…”