Survey of current enteral nutrition practices in treatment of amyotrophic lateral sclerosis

Zhang, May; Hubbard, Jane; Rudnicki, Stacy A.; Johansen, Carolyn S.; Dalton, Kate; Heiman‐Patterson, Terry; Wills, Anne‐Marie

doi:10.1016/j.clnme.2012.11.003

Cited by 8 publications

(7 citation statements)

References 18 publications

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“…These complications are predominantly gastrointestinal in relation to intolerance to the formula (diarrhea, constipation, etc. ), followed by respiratory complications and, to a lesser extent, mechanical and metabolic [ 23 , 30 , 31 ]. In our study, we only evaluated mechanical complications related to PEG, observing a striking increase in those patients in whom a PEG was implanted later.…”

Section: Discussionmentioning

confidence: 99%

Impact of Percutaneous Endoscopic Gastrostomy (PEG) on the Evolution of Disease in Patients with Amyotrophic Lateral Sclerosis (ALS)

et al. 2021

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Dysphagia is a highly prevalent symptom in Amyotrophic Lateral Sclerosis (ALS), and the implantation of a percutaneous endoscopic gastrostomy (PEG) is a very frequent event. The aim of this study was to evaluate the influence of PEG implantation on survival and complications in ALS. An interhospital registry of patients with ALS of six hospitals in the Castilla-León region (Spain) was created between January 2015 and December 2017. The data were compared for those in whom a PEG was implanted and those who it was not. A total of 93 patients were analyzed. The mean age of the patients was 64.63 (17.67) years. A total of 38 patients (38.8%) had a PEG implantation. An improvement in the anthropometric parameters was observed among patients who had a PEG from the beginning of nutritional follow-up compared to those who did not, both in BMI (kg/m2) (PEG: 0 months, 22.06; 6 months, 23.04; p < 0.01; NoPEG: 0 months, 24.59–23.87; p > 0.05). Among the deceased patients, 38 (40.4%) those who had an implanted PEG (20 patients (52.6%) had a longer survival time (PEG: 23 (15–35.5) months; NoPEG 11 (4.75–18.5) months; p = 0.01). A PEG showed a survival benefit among ALS patients. Early implantation of a PEG produced a reduction in admissions associated with complications derived from it.

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Section: Discussionmentioning

confidence: 99%

Impact of Percutaneous Endoscopic Gastrostomy (PEG) on the Evolution of Disease in Patients with Amyotrophic Lateral Sclerosis (ALS)

et al. 2021

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“…Moreover, surveys of healthcare professionals (HCPs) have highlighted the lack of evidence and knowledge regarding nutritional management of ALS as a concern (11)(12)(13).…”

Section: Introductionmentioning

confidence: 99%

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

Halliday

Zarotti

Coates

et al. 2021

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

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Objectives: The aim of this study was to investigate how nutritional management services for people with Amyotrophic Lateral Sclerosis (pwALS) are structured in the UK, in order to gain insight into current practice and identify key barriers and enablers to delivering and providing services. Methods: A three-part, sequential mixed-methods study was conducted that comprised (i) a thematic analysis of data from five focus groups (with 47 ALS health professionals from 41 UK organizations and four service user representatives), (ii) a nationwide cross-sectional survey (281 ALS healthcare professionals) and (iii) a freedom of information request (251 organizations). Results: UK nutritional management services for pwALS are coordinated from specialist (n ¼ 22) and non-specialist care centers (n ¼ 89), with national variability in the organization and delivery of services. Multidisciplinary working was highlighted to facilitate the coordination of nutritional care. However, the need to provide evidence-based continuing education for HCPs was evident. Overall, the lack of clear guidelines on the nutritional management of people with ALS was identified as a key barrier to the delivery of effective nutritional care, as was the lack of transparency and consistency in the commissioning of nutritional services. Further concerns over the timeliness of the dietetic intervention and equity of access and provision were raised. Conclusions: Our findings suggest that development of guidelines for nutritional management, particularly at diagnosis and pre-gastrostomy, could drive standardization of high quality nutritional care for pwALS. Such guidance has the potential to reduce inequalities in geographical provision by providing clarity for those commissioning specialist nutrition services.

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“…This makes dietitians’ views and practice important when attempting to understand the current nutritional management of ALS. Previous surveys of the nutritional management of ALS have described a variation in practice used to assess nutritional intake, status and requirements 20,21 . In a survey of 23 dietitians, Rio et al 20 .…”

Section: Introductionmentioning

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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Survey of current enteral nutrition practices in treatment of amyotrophic lateral sclerosis

Cited by 8 publications

References 18 publications

Impact of Percutaneous Endoscopic Gastrostomy (PEG) on the Evolution of Disease in Patients with Amyotrophic Lateral Sclerosis (ALS)

Impact of Percutaneous Endoscopic Gastrostomy (PEG) on the Evolution of Disease in Patients with Amyotrophic Lateral Sclerosis (ALS)

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

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

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