Département d'Études Cognitives, École normale supérieure, PSL University, 75005, Paris, France; Université Paris-Est Créteil, Faculté de médecine, 94000, Créteil, France; Inserm U955, Institut Mondor de Recherche Biomédicale, Équipe E01 NeuroPsychologie Interventionnelle, 94000, Créteil, France; Assistance Publique Hôpitaux de Paris (AP-HP), Centre de référence Maladie de Huntington, Service de Neurologie, Hôpital Henri Mondor-Albert Chenevier, 94000, Créteil, France.
Université Paris-Est Créteil, Faculté de médecine, 94000, Créteil, France; Assistance Publique Hôpitaux de Paris (AP-HP), Unité de Recherche Clinique (URC Mondor), Service de Santé Publique, Hôpital Henri Mondor-Albert Chenevier, 94000, Créteil, France; Inserm U955, Institut Mondor de Recherche Biomédicale, CEpiA (Clinical Epidemiology and Ageing) Team, France.
Parkinsonism Relat Disord. 2022 Oct;103:77-84. doi: 10.1016/j.parkreldis.2022.08.023. Epub 2022 Aug 24.
Caregiver burden is widely recognized in Huntington's disease, but little is known about the factors determining its evolution over time in the absence of longitudinal studies. Our objective was to identify typical patterns of caregiver burden level and evolution using both patients' and caregivers' characteristics over a one-year period to identify potential levers for alleviation.
We conducted a prospective multicenter longitudinal study in caregiver/patient pairs in Huntington's disease (NCT02876445) between March 2011 and May 2015. Caregiver data were derived from two questionnaires at one-year interval on perceived burden (Zarit Burden Interview), social environment and support. Caregiver data were linked to clinical and demographic data from patients included in the Biomarker study (NCT01590589). Unsupervised clustering analysis was performed using self-organizing maps.
105 caregiver/patient pairs were included in the analysis. We identified four clusters. Of the two clusters of patients with advanced disease, cluster A was characterized by high levels of irritability and obsessive-compulsive behaviors, with high and increasing burden (N = 30; 29%), cluster B, the more apathetic group, with low and decreasing burden (N = 22; 21%). Clusters C (N = 27; 26%) and D (N = 26; 25%) were composed of patients in earlier stages, associated with a stable burden in group C but a notably increasing one in group D driven by patients' depression scores increase.
Our results revealed the dynamics of caregiver burden over time in Huntington's disease, combining the stage of the disease, the severity of the patients' decline, psychiatric and behavioral disorders, and their evolution over time.
亨廷顿病中广泛认识到照顾者负担，但由于缺乏纵向研究，对于其随时间演变的决定因素知之甚少。我们的目的是通过患者和照顾者在一年内的特征来确定照顾者负担水平和演变的典型模式，以确定缓解的潜在因素。
我们在 2011 年 3 月至 2015 年 5 月期间进行了一项前瞻性多中心纵向研究，涉及亨廷顿病的照顾者/患者对（NCT02876445）。在一年的间隔时间内，照顾者的数据来自两个问卷，即感知负担（Zarit 负担访谈）、社会环境和支持。将照顾者数据与包含在生物标志物研究（NCT01590589）中的患者的临床和人口统计学数据相关联。使用自组织映射进行无监督聚类分析。
共纳入 105 对照顾者/患者。我们确定了四个聚类。在两个疾病晚期患者的聚类中，聚类 A 的特点是易激惹和强迫行为水平较高，负担水平较高且呈上升趋势（N=30；29%），聚类 B 为更冷漠的组，负担水平较低且呈下降趋势（N=22；21%）。聚类 C（N=27；26%）和聚类 D（N=26；25%）由处于早期阶段的患者组成，聚类 C 中的负担稳定，但聚类 D 中由于患者抑郁评分的增加，负担显著增加。
我们的研究结果揭示了亨廷顿病中照顾者负担随时间的动态变化，结合了疾病的阶段、患者病情的严重程度、精神和行为障碍以及它们随时间的演变。
