Department of Neurology, Johns Hopkins University School of Medicine, Baltimore, MD, 21205, USA.
Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine, Baltimore, MD, 21205, USA.
Cerebellum. 2022 Aug;21(4):592-605. doi: 10.1007/s12311-022-01393-5. Epub 2022 Mar 25.
Semi-structured interviews of patient accounts and caregiver, or informant, perspectives are a beneficial resource for patients suffering from diseases with complex symptomatology, such as cerebellar ataxia. The aim of this study was to identify, quantify, and compare the ways in which cerebellar ataxia patients' and informants' quality of life had changed as a result of living with ataxia. Using a semi-structured interview, responses were collected from patients and informants regarding motor, cognitive, and psychosocial variables. Responses were also collected from patients and informants to open-ended questions that were subsequently categorized into 15 quality of life themes that best represented changes experienced by the patients and informants. Ataxia patients and informants agreed as to the severity of posture/gait, daily activities/fine motor tasks, speech/feeding/swallowing, and oculomotor/vision impairment. It was also demonstrated that severity ratings for specific motor-related functions strongly correlated with corresponding functions within the International Cooperative Ataxia Rating Scale (ICARS), and that this interview identified frequency associations between motor impairments and specific psychosocial difficulties, which could be useful for prognostic purposes. Overall, the information obtained from this study characterized the symptoms and challenges to ataxia patients and their caregivers, which could serve as a useful educational resource for those affected by ataxia, clinicians, and researchers.
对患者病历和护理人员或信息提供者的半结构化访谈是一种有益的资源，可用于研究患有复杂症状疾病的患者，如小脑性共济失调。本研究的目的是识别、量化和比较小脑性共济失调患者及其护理人员生活质量因患病而发生变化的方式。采用半结构化访谈，从患者和信息提供者处收集有关运动、认知和社会心理变量的信息。还向患者和信息提供者提出了一些开放性问题，随后将这些问题分类为 15 个最佳代表患者和信息提供者所经历变化的生活质量主题。共济失调患者和信息提供者一致认为姿势/步态、日常活动/精细运动任务、言语/进食/吞咽和眼球运动/视力受损的严重程度。还表明，特定与运动相关的功能的严重程度评分与国际共济失调协作评估量表（ICARS）中的相应功能高度相关，并且该访谈确定了运动障碍与特定心理社会困难之间的频率关联，这对于预后目的可能是有用的。总的来说，本研究获得的信息描述了共济失调患者及其护理人员的症状和挑战，这可以作为受共济失调影响的患者、临床医生和研究人员的有用教育资源。
