People with ALS who lose just 5% of their body weight double their risk of death, yet no evidence-based guidelines exist for keeping them adequately fed. This programme tackles a critical gap in ALS care. Weight loss in ALS is not simply from muscle wasting—patients burn about 20% more energy at rest than healthy people, a condition called hypermetabolism. Current nutritional guidance is not evidence-based, and surveys show healthcare professionals lack knowledge about managing diet in ALS. A high-calorie diet extended survival by 20% in an ALS mouse model, and a small pilot study in humans suggested a similar benefit, but no large-scale trial has confirmed it. The researchers will map existing nutritional services across the UK, survey clinicians and commissioners, interview patients and carers, and systematically review what helps or hinders people with ALS from consuming enough calories. They will then develop and test a complex intervention called HighCALS—a structured, behaviour-change approach to achieving a high-calorie diet. If successful, HighCALS could provide the first evidence-based nutritional protocol for ALS, potentially extending survival and improving quality of life for thousands of patients. It would also give clinicians a practical, implementable tool where none currently exists.
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Aims The proposed programme aims to develop and test a complex intervention (HighCALS) to enhance the nutritional management of people living with ALS, leading to improvements in survival and quality of life. Underpinning HighCALS is a programme of work to understand the current national service models, the beliefs of stakeholders and the development of behaviour change strategies to support and improve nutritional interventions. Background Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND), is a devastating neurodegenerative disorder. People with ALS (pwALS) experience a progressive weakness of limb muscles, loss of speech, chewing and swallowing, eventually succumbing to the consequences of respiratory failure due to respiratory muscle weakness. There is no cure for ALS. Malnutrition and weight loss are well recognised poor prognostic factors in ALS. In pwALS with weight loss of 5% or more there is a two-fold increase in risk of death, compared to those who have lost less than 5% of their usual pre-morbid weight. Current guidelines are not evidence-based and do not include any guidance on nutritional management with regard to assessment of nutritional status, total daily energy expenditure calculations, appropriate dietary intake or oral nutritional supplementation. Surveys indicate a lack of knowledge in healthcare professions regarding the nutritional management of ALS. The poor evidence base explains the poor nutritional outcomes observed. The weight loss in pwALS is compounded by hypermetabolism with resting energy expenditure being, on average, 20% higher than in healthy individuals. Encouragingly, correction of the energy deficit with a high calorie diet extended life by 20% in an ALS mouse model. Moreover, in pwALS a small pilot study indicated a potential survival advantage and tolerability of a high calorie diet. There is a need to confirm the potential of a high calorie diet to influence the disease course in ALS. Research plan WP1: Exploring current services (Months 1-8) 1.1 We will conduct a mapping review on the structure and activities of the nutritional management services for pwALS. 1.2 We will conduct consultation groups with stakeholders involved in the nutritional management of pwALS to gain further insight into the structure of nutritional management services and current nutritional practice. 1.3 Informed by the mapping review and consultation group findings, we will develop two national surveys. The first will be sent to commissioners, lead clinicians for ALS and dietetic managers. The second survey will be distributed nationally to ALS MDT members. 1.4 Findings from WP1 will inform the workshops with healthcare professionals in WP2 exploring barriers and enablers of nutritional interventions. They will also be used in the development of the HighCALS intervention (WP3), specifically related to ensuring that the intervention can take place within existing services and be implemented into clinical practice. WP2: Understanding barriers and enablers (Months 1-12) 2.1 We will conduct a systematic review on factors (e.g. beliefs, knowledge) associated with nutritional behaviours (e.g. compliance with oral nutritional supplements) to achieve a high calorie diet in ALS. 2.2. We will conduct a systematic review on interventions to promote nutritional behaviours to achieve a high calorie diet in ALS. 2.3 We will conduct interviews with patients and carers to explore their beliefs about the barriers and enablers of nutritional interventions in ALS. 2.4 We will conduct focus groups with MDT members to explore their beliefs about the barriers and enablers of nutritional interventions. WP3: HighCALS intervention development (Months 1-25) 3.1 We will synthesise and link the key modifiable factors associated with nutritional behaviours to achieve a high calorie diet in ALS and the key features of interventions (e.g. behaviour change techniques) to pro
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