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).
OBJECTIVE: 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.
CONCLUSIONS: 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.
OBJECTIVE: 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.
CONCLUSIONS: 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.
摘要：
背景：通过经皮内镜胃造瘘术（PEG）进行临床辅助营养和水合是一种治疗选择，可以改善与分解代谢增强相关的困难，减肥,和吞咽困难的亨廷顿病（HD）。
目标：目标是提供对人口统计学的见解，分期（Shoulson-Fahn），并发症,重量轨迹，以及接受PEG治疗的HD（pwHD）患者的生存率。
方法：这项回顾性研究包括在2006年7月至2024年3月期间在我们的HD诊所就诊的705例连续pwHD，其中52例接受了PEG治疗。对照组（n=52），包含不含PEG的pwHD，在性别上非常匹配，舞台,年龄,CAG长度,和PEG的疾病负担评分。该研究在国家神经病学和神经外科医院注册为服务评估。
结果：显示pwHD中的PEG患病率为15.0%（n=52/347）：第3阶段为4.8%（n=3/62）；第4阶段为33.3%（n=16/48）；第5阶段为44.1%（n=30/68）。最常见的适应症是吞咽困难,减肥,和口服摄入不足。并发症包括胸部感染，管移位,以及造口周围和皮肤感染。PEG后体重轨迹的建模发现PEG和非PEG组之间没有差异。PEG组的死亡率为34.6％（n=18/52），非PEG组的死亡率为36.5％（n=19/52）（P=0.84）。治疗持续时间（直到研究终点或死亡）为3.48年（四分位数范围=1.71-6.02；范围=0.23-18.8），65.4%(n=34/52)在研究终点存活。
结论：有体重减轻风险的pwHD中的PEG可能有助于减缓体重减轻。需要前瞻性研究来加强pwHD的PEG决策。PEG的生存期比其他痴呆症长得多，强调需要在pwHD中独立考虑PEG。
目标：目标是提供对人口统计学的见解，分期（Shoulson-Fahn），并发症,重量轨迹，以及接受PEG治疗的HD（pwHD）患者的生存率。
方法：这项回顾性研究包括在2006年7月至2024年3月期间在我们的HD诊所就诊的705例连续pwHD，其中52例接受了PEG治疗。对照组（n=52），包含不含PEG的pwHD，在性别上非常匹配，舞台,年龄,CAG长度,和PEG的疾病负担评分。该研究在国家神经病学和神经外科医院注册为服务评估。
结果：显示pwHD中的PEG患病率为15.0%（n=52/347）：第3阶段为4.8%（n=3/62）；第4阶段为33.3%（n=16/48）；第5阶段为44.1%（n=30/68）。最常见的适应症是吞咽困难,减肥,和口服摄入不足。并发症包括胸部感染，管移位,以及造口周围和皮肤感染。PEG后体重轨迹的建模发现PEG和非PEG组之间没有差异。PEG组的死亡率为34.6％（n=18/52），非PEG组的死亡率为36.5％（n=19/52）（P=0.84）。治疗持续时间（直到研究终点或死亡）为3.48年（四分位数范围=1.71-6.02；范围=0.23-18.8），65.4%(n=34/52)在研究终点存活。
结论：有体重减轻风险的pwHD中的PEG可能有助于减缓体重减轻。需要前瞻性研究来加强pwHD的PEG决策。PEG的生存期比其他痴呆症长得多，强调需要在pwHD中独立考虑PEG。
