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Abstract

Objective

To determine the impact of percutaneous endoscopic gastrostomy (PEG) tubes in patients with advanced Huntington disease (HD).

Methods

A retrospective chart review of patients with HD was conducted to assess the rate of pneumonia and pressure ulcer, length of life, changes in weight, and serologic nutritional measures. Surviving and deceased patients with and without PEG tubes were compared using descriptive statistical analysis.

Results

One hundred forty-eight records were reviewed (39 patients with PEG tubes). The mean age of patients still alive and diagnosed with HD was 58.3 ± 12.7 years and age at death (n = 62) 57.7 ± 10.3 years. At the time of analysis, the mean duration of HD was 14.2 ± 7 years. Groups were similar in sex, age, and weight at admission. In those deceased, insertion of a PEG tube increased the length of life with HD by 3.6 years (16.2 ± 6.7 vs 13.2 ± 4.9 years). PEG tube placement significantly reduced cholesterol levels, increased the prevalence of skin ulcers and the rate of pneumonia. Insertion of a PEG tube did not significantly change weight or albumin levels.

Conclusions

PEG tube placement in advanced HD provided benefit in the length of life, but weight, other nutritional measures, and the rate of pneumonia were either not impacted or worsened with the insertion of a PEG tube. Impact on quality of life needs further study, but providers, patients, and families should consider all options when discussing preferences for interventions.

Classification of Evidence

This study provides Class IV evidence that for patients with advanced HD, PEG tube placement increases the length of life but has no or negative impacts on nutritional measures.

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Information & Authors

Information

Published In

Neurology® Clinical Practice
Volume 11Number 6December 2021
Pages: 517-520

Publication History

Received: September 25, 2020
Accepted: March 19, 2021
Published online: April 16, 2021
Published in print: December 2021

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Disclosure

The authors report no disclosures relevant to the manuscript. Full disclosure form information provided by the authors is available with the full text of this article at Neurology.org/cp.

Study Funding

This work was supported in part by the More Fives Fund (morefives.org/).

Authors

Affiliations & Disclosures

University of Vermont (EF), Burlington, VT; University of New Hampshire (AD), Manchester, NH; and Beth Israel Deaconess Medical Center (SM, EM, SF), Boston, MA.
Disclosure
Scientific Advisory Boards:
1.
NONE
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
NONE
Editorial Boards:
1.
NONE
Patents:
1.
NONE
Publishing Royalties:
1.
NONE
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
NONE
Speakers' Bureaus:
1.
NONE
Other Activities:
1.
NONE
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
NONE
Research Support, Government Entities:
1.
NONE
Research Support, Academic Entities:
1.
NONE
Research Support, Foundations and Societies:
1.
NONE
Stock/stock Options/board of Directors Compensation:
1.
NONE
License Fee Payments, Technology or Inventions:
1.
NONE
Royalty Payments, Technology or Inventions:
1.
NONE
Stock/stock Options, Research Sponsor:
1.
NONE
Stock/stock Options, Medical Equipment & Materials:
1.
NONE
Legal Proceedings:
1.
NONE
Allison Dyke, BS [email protected]
University of Vermont (EF), Burlington, VT; University of New Hampshire (AD), Manchester, NH; and Beth Israel Deaconess Medical Center (SM, EM, SF), Boston, MA.
Disclosure
Scientific Advisory Boards:
1.
NONE
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
NONE
Editorial Boards:
1.
NONE
Patents:
1.
NONE
Publishing Royalties:
1.
NONE
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
NONE
Speakers' Bureaus:
1.
NONE
Other Activities:
1.
NONE
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
NONE
Research Support, Government Entities:
1.
NONE
Research Support, Academic Entities:
1.
NONE
Research Support, Foundations and Societies:
1.
NONE
Stock/stock Options/board of Directors Compensation:
1.
NONE
License Fee Payments, Technology or Inventions:
1.
NONE
Royalty Payments, Technology or Inventions:
1.
NONE
Stock/stock Options, Research Sponsor:
1.
NONE
Stock/stock Options, Medical Equipment & Materials:
1.
NONE
Legal Proceedings:
1.
NONE
Sarah MacKenzie, MS, CCC-SLP, CBIS [email protected]
University of Vermont (EF), Burlington, VT; University of New Hampshire (AD), Manchester, NH; and Beth Israel Deaconess Medical Center (SM, EM, SF), Boston, MA.
Disclosure
Scientific Advisory Boards:
1.
NONE
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
(1) Harvard Medical School, speaker honoraria
Editorial Boards:
1.
NONE
Patents:
1.
NONE
Publishing Royalties:
1.
NONE
Employment, Commercial Entity:
1.
(1) Beth Israel Deaconess Medical Center, SLP III, 2016- 2021 (2) Spaulding Rehabilitation Hospital, SLP, 2012-2021 (3) Emerson College - Speech@Emerson graduate program, course facilitator, 2020-2021
Consultancies:
1.
NONE
Speakers' Bureaus:
1.
NONE
Other Activities:
1.
NONE
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
NONE
Research Support, Government Entities:
1.
NONE
Research Support, Academic Entities:
1.
NONE
Research Support, Foundations and Societies:
1.
NONE
Stock/stock Options/board of Directors Compensation:
1.
NONE
License Fee Payments, Technology or Inventions:
1.
NONE
Royalty Payments, Technology or Inventions:
1.
NONE
Stock/stock Options, Research Sponsor:
1.
NONE
Stock/stock Options, Medical Equipment & Materials:
1.
NONE
Legal Proceedings:
1.
NONE
Evagelia Maskwa, RD, LDN, CNSC [email protected]
University of Vermont (EF), Burlington, VT; University of New Hampshire (AD), Manchester, NH; and Beth Israel Deaconess Medical Center (SM, EM, SF), Boston, MA.
Disclosure
Scientific Advisory Boards:
1.
NONE
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
NONE
Editorial Boards:
1.
NONE
Patents:
1.
NONE
Publishing Royalties:
1.
NONE
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
NONE
Speakers' Bureaus:
1.
NONE
Other Activities:
1.
NONE
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
NONE
Research Support, Government Entities:
1.
NONE
Research Support, Academic Entities:
1.
NONE
Research Support, Foundations and Societies:
1.
NONE
Stock/stock Options/board of Directors Compensation:
1.
NONE
License Fee Payments, Technology or Inventions:
1.
NONE
Royalty Payments, Technology or Inventions:
1.
NONE
Stock/stock Options, Research Sponsor:
1.
NONE
Stock/stock Options, Medical Equipment & Materials:
1.
NONE
Legal Proceedings:
1.
NONE
Samuel Frank, MD
University of Vermont (EF), Burlington, VT; University of New Hampshire (AD), Manchester, NH; and Beth Israel Deaconess Medical Center (SM, EM, SF), Boston, MA.
Disclosure
Scientific Advisory Boards:
1.
I serve as the Chair of the DSMB for KINECT-HD, a Huntington Study Group study funded by Neurocrine biosciences.
Gifts:
1.
NONE
Funding for Travel or Speaker Honoraria:
1.
NONE
Editorial Boards:
1.
Associate Editor of Journal of Huntington Disease
Patents:
1.
NONE
Publishing Royalties:
1.
NONE
Employment, Commercial Entity:
1.
NONE
Consultancies:
1.
Sage Therapeutics, Skyhawk Pharmaceuticals, Oscine Therapeutics, uniQure
Speakers' Bureaus:
1.
NONE
Other Activities:
1.
NONE
Clinical Procedures or Imaging Studies:
1.
NONE
Research Support, Commercial Entities:
1.
Roche/Genentech, Huntington Study Group/Vaccinex, Triplet Therapeutics
Research Support, Government Entities:
1.
NONE
Research Support, Academic Entities:
1.
NONE
Research Support, Foundations and Societies:
1.
CHDI Foundation, Huntington's Disease Society of America
Stock/stock Options/board of Directors Compensation:
1.
NONE
License Fee Payments, Technology or Inventions:
1.
NONE
Royalty Payments, Technology or Inventions:
1.
NONE
Stock/stock Options, Research Sponsor:
1.
NONE
Stock/stock Options, Medical Equipment & Materials:
1.
NONE
Legal Proceedings:
1.
NONE

Notes

Correspondence Dr. S. Frank [email protected]
Funding information and disclosures are provided at the end of the article. Full disclosure form information provided by the authors is available with the full text of this article at Neurology.org/cp.

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