title: Survey of current enteral nutrition practices in treatment of amyotrophic lateral sclerosis.
abstract: OBJECTIVE
  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.
authors.affiliation: Washington University School of Medicine, Saint Louis, MO, United States.
authors.forename: May
authors.initials: M
authors.lastname: Zhang
authors.affiliation: Harvard Catalyst Clinical Research Center, Massachusetts General Hospital, Harvard Medical School, Boston, MA, United States.
authors.forename: Jane
authors.initials: J
authors.lastname: Hubbard
authors.affiliation: University of Arkansas for Medical Sciences, Little Rock, AR, United States.
authors.forename: Stacy A
authors.initials: SA
authors.lastname: Rudnicki
authors.affiliation: Fletcher Allen Health Care, Burlington, VT, United States.
authors.forename: Carolyn S
authors.initials: CS
authors.lastname: Johansen
authors.affiliation: Columbia University Medical Center, New York, NY, United States.
authors.forename: Kate
authors.initials: K
authors.lastname: Dalton
authors.affiliation: Department of Neurology, Drexel University College of Medicine, Philadelphia, PA, United States.
authors.forename: Terry
authors.initials: T
authors.lastname: Heiman-Patterson
authors.affiliation: Forbes Norris ALS Research Center, California Pacific Medical Center, San Francisco, CA, United States.
authors.forename: Dalles A
authors.initials: DA
authors.lastname: Forshew
authors.affiliation: Neurology Clinical Trials Unit, Massachusetts General Hospital, Harvard Medical School, Charlestown, MA, United States.
authors.forename: Anne-Marie
authors.initials: AM
authors.lastname: Wills
keywords: ALS; Amyotrophic lateral sclerosis; Dysphagia; Enteral nutrition; PEG; Weight loss