Delivery of nutritional management services to people with amyotrophic lateral sclerosis (ALS)

Halliday, Vanessa; Zarotti, Nicolò; Coates, Elizabeth; McGeachan, Alexander; Williams, Isobel; White, Sean; Beever, Daniel; Norman, Paul; Gonzalez, Sarah; Hackney, Gemma; Ezaydi, Naseeb; Stavroulakis, Theocharis; Bradburn, Mike; McDermott, Christopher J.

doi:10.1080/21678421.2021.1874991

Cited by 6 publications

(6 citation statements)

References 22 publications

(23 reference statements)

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“…This finding is consistent with recent evidence charting the provision of ALS nutritional management with HCPs. 15, 24…”

Section: Discussionmentioning

confidence: 99%

“…A lack of care continuity and geographical variation, and the facilitative power of person-centred care, have also previously been documented in a survey of ALS HCPs. 24 The importance of case management in ALS has also recently been highlighted. 25, 26 Similarly, the significant role played by informal carers in ALS is well documented, 27, 28 but our study sheds light on how they contribute in relation to eating and drinking.…”

Section: Discussionmentioning

confidence: 99%

“…This finding is consistent with recent evidence charting the provision of ALS nutritional management with HCPs. 15,24 Within the 'Opportunity -Physical' and 'Opportunity -Social' components, the availability and influence of both formal healthcare provision and informal caring networks were highlighted. A lack of care continuity and geographical variation, and the facilitative power of person-centred care, have also previously been documented in a survey of ALS HCPs.…”

Section: Summary Of Main Findingsmentioning

confidence: 99%

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

et al. 2021

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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.

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“…This finding is consistent with recent evidence charting the provision of ALS nutritional management with HCPs. 15, 24…”

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Summary Of Main Findingsmentioning

confidence: 99%

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

et al. 2021

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“…The design of this cross-sectional survey was informed by the findings of a mapping review of the literature on the structure and input of nutritional management services for ALS and stakeholder workshops with healthcare professionals in the UK. 22,23 The survey questions were developed through discussions between the study team and modified in response to the feedback from multidisciplinary team members (including five dietitians) who piloted the survey.…”

Section: Ethodsmentioning

confidence: 99%

The nutritional management of people living with amyotrophic lateral sclerosis: A national survey of dietitians

White

Zarotti

Beever

et al. 2021

J Human Nutrition Diet

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Background: People living with amyotrophic lateral sclerosis (ALS) face many challenges with respect to taking adequate nutrition. Growing evidence links weight loss with negative prognostic outcomes. We aimed to explore the practice of dietitians in the UK with regard to the nutritional management of ALS.Methods: A national online survey was disseminated via professional groups, social media and newsletters to UK healthcare professionals between September and November 2018. The survey examined the nutritional management of ALS. Dietitian responses are reported in the present study. Results:In total, 130 dietitians responded to the survey. Two-thirds reported that ALS comprised less than 20% of their total patient caseload. Forty-two percent reported that nutritional screening took place in their organisation. One-half of dietitians reported that patients were referred for dietetic assessment at 'about the right time', although 44% reported referrals were made too late. The majority (83%) of dietitians used resting energy expenditure predictive equations not validated in ALS. When setting weight goals, dietitians reported most frequently recommending weight maintenance if the patient's body mass index was 18.5-25 kg m −2 (72%), 25-30 kg m −2 (98%), and > 30 kg m −2 (79%). In addition, 43% reported that people with ALS were not weighed sufficiently frequently. Conclusions:Although the importance of early nutritional assessment is recognised, the timeliness of dietetic input and on-going monitoring of nutritional status in ALS care might not currently be ideal. Dietitians report using energy requirement predictive equations and setting weight goals that may not promote positive outcomes.

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“…During the entire disease course, caregivers of patients with ALS could need to acquire management skills for supporting patients in executing cough assistance and using home ventilators, and/or promoting nutritional interventions and enteral feeding ( 17 , 18 ). Therefore, patients with ALS need to have support from informal caregivers ( 10 ).…”

Section: Introductionmentioning

confidence: 99%

Psychological Support for Family Caregivers of Patients With Amyotrophic Lateral Sclerosis at the Time of the Coronavirus Disease 2019 Pandemic: A Pilot Study Using a Telemedicine Approach

et al. 2022

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The coronavirus disease 2019 (COVID-19) pandemic confined most of the population to homes worldwide, and then, a lot of amyotrophic lateral sclerosis (ALS) centers moved to telemedicine services to continue to assist both patients with ALS and their caregivers. This pilot, randomized, controlled study aimed to explore the potential role of psychological support interventions for family caregivers of patients with ALS through resilience-oriented sessions of group therapy during the COVID-19 pandemic. In total, 12 caregivers agreed to be remotely monitored by our center since March 2020 and underwent scales for global burden (i.e., Caregiver Burden Inventory, CBI), resilience (i.e., Connor Davidson Resilience Scale, CD-RISC), and perceived stress (i.e., Perceived Stress Scale, PSS) at two-time points (i.e., at pre-treatment assessment and after 9 months or at post-treatment assessment). They were randomized into two groups: the former group underwent resilience-oriented sessions of group therapy two times a month for 3 months, while the latter one was only remotely monitored. No significant differences were found in CBI, CD-RISC, and PSS during the 9-month observation period in the treated group compared with the control group, suggesting a trend toward stability of caregiver burden together with resilience and perceived stress scores in all the subjects monitored. The lack of differences in caregivers’ burden, resilience, and perceived stress scores by comparing the two groups monitored during 9 months could be due to the co-occurrence of the COVID-19 pandemic with the stressful events related to caring for patients with ALS that might have hindered the detection of significant benefits from short-lasting psychological support.

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Delivery of nutritional management services to people with amyotrophic lateral sclerosis (ALS)

Cited by 6 publications

References 22 publications

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

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

The nutritional management of people living with amyotrophic lateral sclerosis: A national survey of dietitians

Psychological Support for Family Caregivers of Patients With Amyotrophic Lateral Sclerosis at the Time of the Coronavirus Disease 2019 Pandemic: A Pilot Study Using a Telemedicine Approach

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