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

Published:December 26, 2012DOI:https://doi.org/10.1016/j.clnme.2012.11.003

      Summary

      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 non-compliance. 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.

      Keywords

      Abbreviations:

      AND (Academy of Nutrition and Dietetics), ALS (amyotrophic lateral sclerosis), ALSA (Amyotrophic Lateral Sclerosis Association), BMI (body mass index), EN (enteral nutrition), MDA (Muscular Dystrophy Association), PEG (percutaneous endoscopic gastrostomy), RIG (radiologically inserted gastrostomy)
      To read this article in full you will need to make a payment

      Subscribe:

      Subscribe to Clinical Nutrition ESPEN
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect

      References

        • Kasarskis E.J.
        • Berryman S.
        • Vanderleest J.G.
        • Schneider A.R.
        • McClain C.J.
        Nutritional status of patients with amyotrophic lateral sclerosis: relation to the proximity of death.
        Am J Clin Nutr. 1996; 63: 130-137
        • Genton L.
        • Viatte V.
        • Janssens J.P.
        • Héritier A.C.
        • Pichard C.
        Nutritional state, energy intakes and energy expenditure of amyotrophic lateral sclerosis (ALS) patients.
        Clin Nutr. 2011; 30: 553-559
        • Slowie L.A.
        • Paige M.S.
        • Antel J.P.
        Nutritional considerations in the management of patients with amyotrophic lateral sclerosis (ALS).
        J Am Diet Assoc. 1983; 83: 44-47
        • Paganoni S.
        • Deng J.
        • Jaffa M.
        • Cudkowicz M.E.
        • Wills A.M.
        Body mass index, not dyslipidemia, is an independent predictor of survival in amyotrophic lateral sclerosis.
        Muscle Nerve. 2011; 44: 20-24
        • Nau K.L.
        • Bromberg M.B.
        • Forshew D.A.
        • Katch V.L.
        Individuals with amyotrophic lateral sclerosis are in caloric balance despite losses in mass.
        J Neurol Sci. 1995; 129: 47-49
        • Heffernan C.
        • Jenkinson C.
        • Holmes T.
        • Feder G.
        • Kupfer R.
        • Leigh P.N.
        • et al.
        Nutritional management in MND/ALS patients: an evidence based review.
        Amyotroph Lateral Scler Other Motor Neuron Disord. 2004; 5: 72-83
        • Miller R.G.
        • Jackson C.E.
        • Kasarskis E.J.
        • England J.D.
        • Forshew D.
        • Johnston W.
        • et al.
        • Quality Standards Subcommittee of the American Academy of Neurology
        Practice parameter update: the care of the patient with amyotrophic lateral sclerosis: drug, nutritional, and respiratory therapies (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology.
        Neurology. 2009; 73: 1218-1226
        • Andersen P.M.
        • Abrahams S.
        • Borasio G.D.
        • de Carvalho M.
        • Chio A.
        • Van Damme P.
        • et al.
        • EFNS Task Force on Diagnosis and Management of Amyotrophic Lateral Sclerosis
        EFNS guidelines on the clinical management of amyotrophic lateral sclerosis (MALS)—revised report of an EFNS task force.
        Eur J Neurol. 2012; 19: 360-375
        • Miller R.G.
        • Anderson F.
        • Neelam G.
        • Wei H.
        The ALS patient CARE program-Northern American patient CARE database.
        in: Mitsumoto H. Przedborski S. Gordon P.H. Amyotrophic lateral sclerosis. Taylor & Francis Group, 2006: 633-648
        • Chiò A.
        • Silani V.
        • Italian ALS Study Group
        Amyotrophic lateral sclerosis care in Italy: a nationwide study in neurological centers.
        J Neurol Sci. 2001; 191: 145-150
        • Rio A.
        • Cawadias E.
        Nutritional advice and treatment by dietitians to patients with amyotrophic lateral sclerosis/motor neuron disease: a survey of current practice in England, Wales, Northern Ireland and Canada.
        J Hum Nutr Diet. 2007; 20: 3-13
        • Bastow M.D.
        Complications of enteral nutrition.
        Gut. 1986; 27: 51-55
        • Löser C.
        • Wolters S.
        • Fölsch U.R.
        Enteral long-term nutrition via percutaneous endoscopic gastrostomy (PEG) in 210 patients: a four-year prospective study.
        Dig Dis Sci. 1998; 43: 2549-2557
        • Kraft M.D.
        • Btaiche I.F.
        • Sacks G.S.
        Review of the refeeding syndrome.
        Nutr Clin Pract. 2005; 20: 625-633
        • Toepfer M.
        • et al.
        Gastrointestinal dysfunction in amyotrophic lateral sclerosis.
        Amyotroph Lateral Scler Other Motor Neuron Disord. 1999; 1: 15-19
        • Toepfer M.
        • et al.
        Noninvasive (13)C-octanoic acid breath test shows delayed gastric emptying in patients with amyotrophic lateral sclerosis.
        Digestion. 1999; 60: 567-571
        • Chiò A.
        • Finocchiaro E.
        • Meineri P.
        • Bottacchi E.
        • Schiffer D.
        • ALS Percutaneous Endoscopic Gastrostomy Study Group
        Safety and factors related to survival after percutaneous endoscopic gastrostomy in ALS.
        Neurology. 1999; 53: 1123
        • FOOD Trial Collaboration
        Effect of timing and method of enteral tube feeding for dysphagic stroke patients (FOOD): a multicenter randomized controlled trial.
        Lancet. 2005; 365: 764-772
        • Bath P.M.
        • Bath F.J.
        • Smithard D.G.
        Interventions for dysphagia in acute stroke.
        Cochrane Database Syst Rev. 2000; : CD000323