亨廷顿病中的非正规护理：客观-主观负担及其相关风险和保护因素的评估。
Informal care in Huntington's disease: Assessment of objective-subjective burden and its associated risk and protective factors.
机构信息
Service de Médecine Physique et de Réadaptation, hôpital Pitié-Salpêtrière, APHP, Paris, France et Faculté de Médecine, Sorbonne Université, Paris, France; Laboratoire d'Imagerie Biomédicale (LIB), Sorbonne Université, Paris, France; Global Brain Health Institute, University of California San Francisco, San Francisco, USA.
Global Brain Health Institute, University of California San Francisco, San Francisco, USA; National Reference Center for Huntington's Disease, Département de Neurologie, hôpital Henri Mondor-Albert Chenevier, APHP, Créteil, France; Equipe Neuropsychologie Interventionnelle, Département d'Etudes Cognitives, Ecole normale supérieure, PSL Research University, Institut Mondor de Recherche Biomédicale, Université Paris-Est Créteil, INSERM U955 E01, Paris et Créteil, France; Faculté de Médecine, Université Paris-Est Créteil, Créteil, France.
出版信息
Ann Phys Rehabil Med. 2023 May;66(4):101703. doi: 10.1016/j.rehab.2022.101703. Epub 2022 Dec 2.
BACKGROUND
Because of the genetic transmission of Huntington's disease (HD), informal caregivers (ICs, i.e., non-professional caregivers) might experience consecutive and/or concurrent caregiving roles to support several symptomatic relatives with HD over their life. Additionally, some ICs might be HD carriers. However, whether family burden of care is associated with specific factors in HD remains poorly studied.
OBJECTIVE
To provide a quantitative view of the IC burden and identify associated factors.
METHODS
This was a cross-sectional assessment of home-dwelling symptomatic HD individuals (from REGISTRY and Bio-HD studies) and their primary adult ICs, including the HD individual's motor, cognitive, behavioral, functional Unified Huntington's Disease Rating Scale score; IC objective burden (quantification of IC time in activities of daily living, instrumental activities of daily living and supervision, using the Resource Utilization in Dementia instrument), IC subjective burden (Zarit Burden Inventory), and ICs' social economic functioning and use of professional home care.
RESULTS
We included 80 ICs (mean [SD] age 57 [12.9] years, 60% women) in charge of 80 individuals with early to advanced stage HD (mean age 56 [12.6] years, 51% men). The mean hours of informal care time was high: 7.3 (7.9) h/day (range 0-24); the mean professional home care was 2.8 (2.8) h/day (range 0.1-12.3). This objective burden increased with higher functional loss of the HD individual and with more severe cognitive-behavioral disorders. The mean subjective burden (35.4 [17.8], range 4-73) showed a high level since the earliest stage of HD; it was associated with HD duration (mean 9.2 [4.7] years) and with aggressive symptoms in individuals (44% of cases). The burden was partially related to the multiplex caregiving status (19%). Protective factors lowering the IC burden included the absence of financial hardship (57%), a strong social network (16%) and keeping active on the job market outside home (46%).
CONCLUSIONS
The objective-subjective burden of ICs related to changing patterns of neuro-psychiatric symptoms and mitigating environmental characteristics around the HD individual-caregiver dyads.
背景
由于亨廷顿病（HD）的遗传传递，非专业照护者（IC，即非正式照护者）可能会在其一生中连续或同时承担照顾多名有症状的 HD 亲属的角色。此外，一些 IC 可能是 HD 携带者。然而，家庭照护负担是否与 HD 中的特定因素有关仍研究甚少。
目的
提供 IC 负担的定量视图并确定相关因素。
方法
这是对居住在家庭中的有症状的 HD 个体（来自 REGISTRY 和 Bio-HD 研究）及其主要成年 IC 的横断面评估，包括 HD 个体的运动、认知、行为、功能统一亨廷顿病评定量表评分；IC 客观负担（使用痴呆资源利用量表量化 IC 在日常生活活动、工具性日常生活活动和监督中的时间）、IC 主观负担（Zarit 负担量表）以及 IC 的社会经济功能和使用专业家庭护理。
结果
我们纳入了 80 名负责 80 名早期至晚期 HD 个体（平均年龄 56 [12.6] 岁，51%为男性）的 IC（平均年龄 57 [12.9] 岁，60%为女性）。非正式照护时间的平均小时数很高：7.3（7.9）小时/天（范围 0-24）；平均专业家庭护理时间为 2.8（2.8）小时/天（范围 0.1-12.3）。这种客观负担随着 HD 个体功能丧失的增加和认知行为障碍的加重而增加。平均主观负担（35.4 [17.8]，范围 4-73）自 HD 的最早阶段开始就表现出较高水平；它与 HD 持续时间（平均 9.2 [4.7] 年）和个体的攻击症状有关（44%的病例）。负担部分与多重照护状态有关（19%）。降低 IC 负担的保护因素包括无经济困难（57%）、强大的社交网络（16%）和保持活跃的家庭外就业市场（46%）。
结论
IC 的客观-主观负担与不断变化的神经精神症状模式和减轻 HD 个体-照护者对环境的特征有关。
Zotero 插件