Rodríguez Santana Idaira, Frank Samuel A, Mestre Tiago A, Arnesen Astri, Hamilton Jamie L, Hubberstey Hayley, Winkelmann Michaela, Hernandez-Jimenez Elena, Frimpter Jeff, Dolmetsch Ricardo, Ali Talaha M
Prime HCD, Knutsford, United Kingdom.
Harvard Medical School/Beth Israel Deaconess Medical Center, Boston, MA.
Neurol Clin Pract. 2025 Jun;15(3):e200461. doi: 10.1212/CPJ.0000000000200461. Epub 2025 Mar 31.
Suicidal ideation and sleep disturbances are more common among people with Huntington disease (PwHD) than otherwise healthy peers; however, the scope and magnitude of these challenges are not well understood. This study evaluated suicidal thoughts and sleep disturbances among PwHD in Europe and the United States using data from the Huntington's Disease Burden of Illness (HDBOI) study.
The HDBOI study is a cross-sectional burden-of-illness study of PwHD in France, Germany, Italy, Spain, the United Kingdom, and the United States. Eligible participants were adults (18 years and older) with motor manifest Huntington disease (HD) ≥ 12 months before study recruitment. PwHD were categorized as having early-stage (ES), mid-stage (MS), or advanced-stage (AS) HD as reported by the treating physician. Data were collected by the physician, and a voluntary questionnaire was completed by the PwHD or a caregiver. All findings were analyzed descriptively. Differences were assessed using analysis of variance or χ tests.
A total of 2,094 PwHD were included; 1,602 (77%) were from Europe and 492 (23%) were from the United States, with 846 (40%) with ES, 701 (33%) with MS, and 547 (26%) with AS HD. PwHD reported current (13%, n = 272) or previous (28%, n = 575) suicidal ideation, which was more common with advanced HD (ES, 11%; MS, 14%; AS, 15%; < 0.05). Of 482 questionnaire respondents, 91% (n = 437) reported difficulty sleeping, which was more common with AS HD ( < 0.05; [ = 0.000]).
The HDBOI study showed a substantial burden of suicidal ideation and sleep disturbances among PwHD, which tended to worsen with disease severity.
与健康同龄人相比，亨廷顿舞蹈症患者（PwHD）中自杀观念和睡眠障碍更为常见；然而，这些挑战的范围和程度尚未得到充分了解。本研究利用亨廷顿舞蹈症疾病负担（HDBOI）研究的数据，评估了欧洲和美国PwHD中的自杀想法和睡眠障碍情况。
HDBOI研究是一项针对法国、德国、意大利、西班牙、英国和美国PwHD的横断面疾病负担研究。符合条件的参与者为在研究招募前运动症状出现≥12个月的成年（18岁及以上）亨廷顿舞蹈症（HD）患者。根据主治医生报告，PwHD被分类为患有早期（ES）、中期（MS）或晚期（AS）HD。数据由医生收集，PwHD或护理人员完成一份自愿问卷。所有结果均进行描述性分析。使用方差分析或χ检验评估差异。
共纳入2094例PwHD；1602例（77%）来自欧洲，492例（23%）来自美国，其中846例（40%）为ES HD，701例（33%）为MS HD，547例（26%）为AS HD。PwHD报告当前（13%，n = 272）或既往（28%，n = 575）有自杀观念，晚期HD更为常见（ES，11%；MS，14%；AS，15%；P < 0.05）。在482名问卷受访者中，91%（n = 437）报告存在睡眠困难，AS HD更为常见（P < 0.05；P = 0.000）。
HDBOI研究表明，PwHD中存在大量自杀观念和睡眠障碍负担，且随着疾病严重程度加重而趋于恶化。
