May Zhang1, Jane Hubbard2, Stacy A Rudnicki3, Carolyn S Johansen4, Kate Dalton5, Terry Heiman-Patterson6, Dalles A Forshew7, Anne-Marie Wills8. 1. Washington University School of Medicine, Saint Louis, MO, United States. 2. Harvard Catalyst Clinical Research Center, Massachusetts General Hospital, Harvard Medical School, Boston, MA, United States. 3. University of Arkansas for Medical Sciences, Little Rock, AR, United States. 4. Fletcher Allen Health Care, Burlington, VT, United States. 5. Columbia University Medical Center, New York, NY, United States. 6. Department of Neurology, Drexel University College of Medicine, Philadelphia, PA, United States. 7. Forbes Norris ALS Research Center, California Pacific Medical Center, San Francisco, CA, United States. 8. Neurology Clinical Trials Unit, Massachusetts General Hospital, Harvard Medical School, Charlestown, MA, United States.
Abstract
BACKGROUND AND AIMS: Enteral nutrition (EN) is commonly prescribed for dysphagia and weight loss in amyotrophic lateral sclerosis (ALS), but there are currently no ALS-specific EN guidelines. We aimed to survey current practices prescribing EN to ALS patients. METHODS: An online survey was distributed using list servers administered by the Academy of Nutrition and Dietetics (AND), Muscular Dystrophy Association (MDA), and ALS Association (ALSA). RESULTS: A total of 148 dietitians, nurses, and physicians participated in the survey, of whom 50% were dietitians and 68% were associated with an ALS clinic. Only 47% of respondents reported their patients to be fully compliant with EN recommendations. Side effects (fullness, diarrhea, constipation, and bloating) were the most important reason for patient noncompliance, followed by dependence on caregivers. By contrast, only 3% of providers rated depression/hopelessness as the most important reason for noncompliance. Half of those surveyed reported that more than 25% of patients continued to lose weight after starting EN. CONCLUSIONS: Our survey results show a high frequency of gastrointestinal side effects and weight loss in ALS patients receiving EN. These findings may be limited by sampling error and non-response bias. Prospective studies are needed to help establish EN guidelines for ALS.
BACKGROUND AND AIMS: Enteral nutrition (EN) is commonly prescribed for dysphagia and weight loss in amyotrophic lateral sclerosis (ALS), but there are currently no ALS-specific EN guidelines. We aimed to survey current practices prescribing EN to ALSpatients. METHODS: An online survey was distributed using list servers administered by the Academy of Nutrition and Dietetics (AND), Muscular Dystrophy Association (MDA), and ALS Association (ALSA). RESULTS: A total of 148 dietitians, nurses, and physicians participated in the survey, of whom 50% were dietitians and 68% were associated with an ALS clinic. Only 47% of respondents reported their patients to be fully compliant with EN recommendations. Side effects (fullness, diarrhea, constipation, and bloating) were the most important reason for patient noncompliance, followed by dependence on caregivers. By contrast, only 3% of providers rated depression/hopelessness as the most important reason for noncompliance. Half of those surveyed reported that more than 25% of patients continued to lose weight after starting EN. CONCLUSIONS: Our survey results show a high frequency of gastrointestinal side effects and weight loss in ALSpatients receiving EN. These findings may be limited by sampling error and non-response bias. Prospective studies are needed to help establish EN guidelines for ALS.
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