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Outcomes of Percutaneous Endoscopic Gastrostomy in Huntington's Disease at a Tertiary Center

Farag, Mena; Coleman, Annabelle; Knights, Harry; Murphy, Michael J; Rajagopal, Sangeerthana; Touzé, Alexiane; Shoai, Maryam; ... Tabrizi, Sarah J; + view all (2024) Outcomes of Percutaneous Endoscopic Gastrostomy in Huntington's Disease at a Tertiary Center. Movement Disorders Clinical Practice 10.1002/mdc3.14130. (In press). Green open access

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Abstract

Background: Clinically assisted nutrition and hydration via percutaneous endoscopic gastrostomy (PEG) is a therapeutic option to ameliorate the difficulties associated with enhanced catabolism, weight loss, and dysphagia in Huntington's disease (HD). // Objectives: The objective is to provide insights into demographics, staging (Shoulson-Fahn), complications, weight trajectories, and survival rates in people with HD (pwHD) who underwent PEG. // Methods: This retrospective study included 705 consecutive pwHD who attended our HD clinic between July 2006 and March 2024, of whom 52 underwent PEG. A control group (n = 52), comprising pwHD without PEG, were closely matched for sex, stage, age, CAG length, and disease burden score at PEG. The study was registered as a service evaluation at the National Hospital for Neurology and Neurosurgery. // Results: PEG prevalence was 15.0% (n = 52/347) among manifest pwHD: 4.8% (n = 3/62) for Stage 3; 33.3% (n = 16/48) for stage 4; and 44.1% (n = 30/68) for stage 5. Commonest indications were dysphagia, weight loss, and inadequate oral intake. Complications included chest infection, tube dislodgement, and peristomal and skin infections. Modeling of weight trajectories after PEG found no difference between PEG and non-PEG groups. Mortality rate was 34.6% (n = 18/52) in the PEG and 36.5% (n = 19/52) in the non-PEG groups (P = 0.84). Treatment duration (until study endpoint or death) was 3.48 years (interquartile range = 1.71–6.02; range = 0.23–18.8), with 65.4% (n = 34/52) alive at the study endpoint. // Conclusion: PEG in pwHD at-risk for weight loss may help slow weight loss. Prospective studies are required to strengthen PEG decision-making in pwHD. PEG survival was much longer than other dementias, highlighting the need to consider PEG independently in pwHD.

Type: Article
Title: Outcomes of Percutaneous Endoscopic Gastrostomy in Huntington's Disease at a Tertiary Center
Location: United States
Open access status: An open access version is available from UCL Discovery
DOI: 10.1002/mdc3.14130
Publisher version: http://dx.doi.org/10.1002/mdc3.14130
Language: English
Additional information: This is an open access article under the terms of the Creative Commons Attribution License, https://creativecommons.org/licenses/by/4.0/, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
Keywords: Clinically assisted nutrition and hydration, dysphagia, Huntington’s disease, percutaneous endoscopic gastrostomy, weight loss
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology > Neurodegenerative Diseases
URI: https://discovery.ucl.ac.uk/id/eprint/10193552
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