Percutaneous endoscopic gastrostomy (PEG) in patients with ALS and bulbar dysfunction

Hiroshi Mitsumoto, M. Davidson, D. Moore, N. Gad, M. Brandis, S. Ringel, J. Rosenfeld, J. M. Shefner, M. J. Strong, R. Sufit, F. A. Anderson, Carol Echols, Terry Heiman-Patterson, Theresa Paylor, Vera Huffnagles, Julie Murphy, Jau Shin Lou, David Tullar, Leo McClusky, Pat Damiano & 20 others Robert Miller, Igor Tkachenko, Hans Neville, Kristin Howell Blackwell, Shin Oh, Richard Olney, Jason Mass, Robert Pascuzzi, Angi Michaels, Erik Pioro, Doreen Andrews-Hinders, Jeffrey Rosenfeld, Ruth King, Stephen Scelsa, Jeremy Shefner, Tina Lepsky, Michael Strong, Ann Rowe, Robert L. Sufit, Patricia Casey

Research output: Contribution to journalArticle

94 Citations (Scopus)

Abstract

Objective: To compare characteristics of ALS patients with and without percutaneous endoscopic gastrostomy (PEG). Methods: Using the ALS Patient Care Database, data from patients with and without PEG with ALS Functional Rating Scale-bulbar subscale (ALSFRSb) scores ≤5 were analyzed; follow-up data were also collected. Results: PEG use was markedly increased with declining ALSFRSb scores. Demographics did not differ, but ALSFRS composite scores and bulbar and arm subscale scores were lower (P<0.0001). PEG patients used significantly more assistive devices, multidisciplinary care, home care nurses and aides, had more frequent physician and emergency department visits and hospital admissions (P<0.0001), and had lower health status based on the mini-SIP scale (P=0.0047). PEG use varied greatly between ALS centers. In the follow-up study, positive impact of PEG was noted in 79% of PEG patients but in only 37.5% of patients who received PEG later, based on a small number of patients. PEG use showed no survival benefit. Conclusion: Patients did not receive PEG until bulbar function was severely reduced and overall ALS had markedly progressed. PEG may have been performed too late to demonstrate survival benefits. Aggressive proactive nutritional management appears essential in patients with ALS. To determine whether PEG provides benefits, it must be performed at earlier stages of the disease and prospectively studied.

Original languageEnglish
Pages (from-to)177-185
Number of pages9
JournalAmyotrophic Lateral Sclerosis and Other Motor Neuron Disorders
Volume4
Issue number3
DOIs
StatePublished - Sep 2003

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Gastrostomy
Home Health Aides
Nurses' Aides
Self-Help Devices
Community Health Nurses
Survival
Health Status
Hospital Emergency Service
Patient Care
Demography

Keywords

  • Amyotrophic lateral sclerosis
  • Enteral feeding
  • Motor neuron disease
  • Nutritional care
  • Percutaneous endoscopic gastrostomy

ASJC Scopus subject areas

  • Clinical Neurology
  • Neurology

Cite this

Percutaneous endoscopic gastrostomy (PEG) in patients with ALS and bulbar dysfunction. / Mitsumoto, Hiroshi; Davidson, M.; Moore, D.; Gad, N.; Brandis, M.; Ringel, S.; Rosenfeld, J.; Shefner, J. M.; Strong, M. J.; Sufit, R.; Anderson, F. A.; Echols, Carol; Heiman-Patterson, Terry; Paylor, Theresa; Huffnagles, Vera; Murphy, Julie; Lou, Jau Shin; Tullar, David; McClusky, Leo; Damiano, Pat; Miller, Robert; Tkachenko, Igor; Neville, Hans; Blackwell, Kristin Howell; Oh, Shin; Olney, Richard; Mass, Jason; Pascuzzi, Robert; Michaels, Angi; Pioro, Erik; Andrews-Hinders, Doreen; Rosenfeld, Jeffrey; King, Ruth; Scelsa, Stephen; Shefner, Jeremy; Lepsky, Tina; Strong, Michael; Rowe, Ann; Sufit, Robert L.; Casey, Patricia.

In: Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders, Vol. 4, No. 3, 09.2003, p. 177-185.

Research output: Contribution to journalArticle

Mitsumoto, H, Davidson, M, Moore, D, Gad, N, Brandis, M, Ringel, S, Rosenfeld, J, Shefner, JM, Strong, MJ, Sufit, R, Anderson, FA, Echols, C, Heiman-Patterson, T, Paylor, T, Huffnagles, V, Murphy, J, Lou, JS, Tullar, D, McClusky, L, Damiano, P, Miller, R, Tkachenko, I, Neville, H, Blackwell, KH, Oh, S, Olney, R, Mass, J, Pascuzzi, R, Michaels, A, Pioro, E, Andrews-Hinders, D, Rosenfeld, J, King, R, Scelsa, S, Shefner, J, Lepsky, T, Strong, M, Rowe, A, Sufit, RL & Casey, P 2003, 'Percutaneous endoscopic gastrostomy (PEG) in patients with ALS and bulbar dysfunction', Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders, vol. 4, no. 3, pp. 177-185. https://doi.org/10.1080/14660820310011728
Mitsumoto, Hiroshi ; Davidson, M. ; Moore, D. ; Gad, N. ; Brandis, M. ; Ringel, S. ; Rosenfeld, J. ; Shefner, J. M. ; Strong, M. J. ; Sufit, R. ; Anderson, F. A. ; Echols, Carol ; Heiman-Patterson, Terry ; Paylor, Theresa ; Huffnagles, Vera ; Murphy, Julie ; Lou, Jau Shin ; Tullar, David ; McClusky, Leo ; Damiano, Pat ; Miller, Robert ; Tkachenko, Igor ; Neville, Hans ; Blackwell, Kristin Howell ; Oh, Shin ; Olney, Richard ; Mass, Jason ; Pascuzzi, Robert ; Michaels, Angi ; Pioro, Erik ; Andrews-Hinders, Doreen ; Rosenfeld, Jeffrey ; King, Ruth ; Scelsa, Stephen ; Shefner, Jeremy ; Lepsky, Tina ; Strong, Michael ; Rowe, Ann ; Sufit, Robert L. ; Casey, Patricia. / Percutaneous endoscopic gastrostomy (PEG) in patients with ALS and bulbar dysfunction. In: Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders. 2003 ; Vol. 4, No. 3. pp. 177-185.
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abstract = "Objective: To compare characteristics of ALS patients with and without percutaneous endoscopic gastrostomy (PEG). Methods: Using the ALS Patient Care Database, data from patients with and without PEG with ALS Functional Rating Scale-bulbar subscale (ALSFRSb) scores ≤5 were analyzed; follow-up data were also collected. Results: PEG use was markedly increased with declining ALSFRSb scores. Demographics did not differ, but ALSFRS composite scores and bulbar and arm subscale scores were lower (P<0.0001). PEG patients used significantly more assistive devices, multidisciplinary care, home care nurses and aides, had more frequent physician and emergency department visits and hospital admissions (P<0.0001), and had lower health status based on the mini-SIP scale (P=0.0047). PEG use varied greatly between ALS centers. In the follow-up study, positive impact of PEG was noted in 79{\%} of PEG patients but in only 37.5{\%} of patients who received PEG later, based on a small number of patients. PEG use showed no survival benefit. Conclusion: Patients did not receive PEG until bulbar function was severely reduced and overall ALS had markedly progressed. PEG may have been performed too late to demonstrate survival benefits. Aggressive proactive nutritional management appears essential in patients with ALS. To determine whether PEG provides benefits, it must be performed at earlier stages of the disease and prospectively studied.",
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AU - Moore, D.

AU - Gad, N.

AU - Brandis, M.

AU - Ringel, S.

AU - Rosenfeld, J.

AU - Shefner, J. M.

AU - Strong, M. J.

AU - Sufit, R.

AU - Anderson, F. A.

AU - Echols, Carol

AU - Heiman-Patterson, Terry

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AU - McClusky, Leo

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AU - Oh, Shin

AU - Olney, Richard

AU - Mass, Jason

AU - Pascuzzi, Robert

AU - Michaels, Angi

AU - Pioro, Erik

AU - Andrews-Hinders, Doreen

AU - Rosenfeld, Jeffrey

AU - King, Ruth

AU - Scelsa, Stephen

AU - Shefner, Jeremy

AU - Lepsky, Tina

AU - Strong, Michael

AU - Rowe, Ann

AU - Sufit, Robert L.

AU - Casey, Patricia

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