Simón-Vicente Lucía, Cuesta-García César, Rivadeneyra-Posadas Jéssica, Mariscal Natividad, Aguado Laura, Miguel-Pérez Irene, Saiz-Rodríguez Miriam, García-Bustillo Álvaro, Muñoz-Siscart Ignacio, Piñeiro Dolores, Cubo Esther
Health Science Department, University of Burgos, Burgos, Spain.
Research Unit, Hospital Universitario Burgos, Spain.
Br J Occup Ther. 2023 Jun;86(6):432-440. doi: 10.1177/03080226231156523. Epub 2023 Apr 19.
Huntington's disease (HD) is an autosomal dominant neurodegenerative disorder characterized by motor dysfunction, cognitive impairment, and psychiatric disorders. These symptoms cause functional limitations in occupational performance. This study aimed to describe the difficulties in self-care, productivity, and leisure activities and to analyze the patients' own perception and satisfaction and the association with sex, age, disability, HD severity, and quality of life.
We conducted an observational, retrospective study in 38 patients with HD without cognitive impairment at the Burgos University Hospital. We assessed occupational performance, quality of life, and HD severity with the Canadian Occupational Performance Measure, Short-Form Health Survey 12, Unified Huntington's Disease Rating Scale, Total Functional Capacity, and the Problems Behavior Assessment.
One hundred sixty-five occupations (median 4, range 2-7) were categorized as self-care (50.90%), leisure (30.30%), and productivity (18.79%). Patients reported a higher degree of satisfaction with the activities prioritized than with the degree of performance. Elderly HD patients reported more satisfaction in leisure and women in self-care. Self-ratings of satisfaction in productivity were associated with higher levels of mental wellbeing.
HD patients have problems with their daily life occupations, particularly with self-care. This underlines the need for assessment tools that capture the complexity of occupations.
亨廷顿舞蹈症(HD)是一种常染色体显性神经退行性疾病,其特征为运动功能障碍、认知损伤和精神疾病。这些症状导致职业表现出现功能限制。本研究旨在描述患者在自我护理、生产效率和休闲活动方面的困难,并分析患者自身的认知与满意度,以及其与性别、年龄、残疾程度、HD严重程度和生活质量的关联。
我们在布尔戈斯大学医院对38名无认知损伤的HD患者进行了一项观察性回顾研究。我们使用加拿大职业表现测量量表、简短健康调查问卷12、统一亨廷顿舞蹈症评定量表、总功能能力量表和问题行为评估量表对职业表现、生活质量和HD严重程度进行了评估。
165项活动(中位数为4,范围为2 - 7)被归类为自我护理(50.90%)、休闲(30.30%)和生产效率(18.79%)。患者报告称,对优先安排的活动的满意度高于对活动表现程度的满意度。老年HD患者对休闲活动的满意度更高,女性对自我护理活动的满意度更高。生产效率方面的自我满意度评分与更高水平的心理健康相关。
HD患者在日常生活活动中存在问题,尤其是在自我护理方面。这凸显了需要能够捕捉活动复杂性的评估工具。