Ethics of Patients and Care Partners Perspectives on Personality Change in Parkinsons disease and Deep Brain Stimulation

患者和护理伙伴对帕金森病和深部脑刺激人格改变的伦理观点

• 批准号: 9419030
• 负责人: Cynthia M. S. Kubu
• 金额: $ 44.83万
• 依托单位: CLEVELAND CLINIC LERNER COM-CWRU
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-09-13 至 2021-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9419030
• 关键词: Address; Biological Preservation; Caring; Characteristics; Clinical; Communication; Consent; Data; Deep Brain Stimulation; Development; Diagnosis; Disease; Ethics; Extroversion; Family; Family member; Feeling; Friends; Fright; Goals; Individual; Informed Consent; Interview; Language; Lead; Literature; Maintenance; Measures; Methodology; Motor; Nature; Neurodegenerative Disorders; Operative Surgical Procedures; Parkinson Disease; Participant; Partner Communications; Patient Care; Patients; Pattern; Perception; Personality; Personality Character; Process; Provider; Severities; Structure; Thinking; Uncertainty; Visual; Work; analog; burden of illness; experience; illness length; improved; insight; motor symptom; nervous system disorder; neurosurgery; novel; prospective; social; theories

PROJECT SUMMARY In our work with patients with neurological disorders, we often encounter patients and families who are afraid. They are afraid that due to their neurodegenerative disorder or potential treatment, such as neurosurgery, they will cease to exist – they will no longer be who they “are”. Clinicians typically refer to this construct as personality or characteristic patterns of thinking, feeling, and behaving. Controversy and uncertainty exist regarding the nature and extent of personality changes following deep brain stimulation (DBS) for the treatment of Parkinson's disease (PD). The proposed study systematically explores patients' and care partners' (e.g., family members, friends) perspectives and experiences regarding the preservation of their individually elicited most valued personality characteristics at different stages of PD and over the course of DBS. These narrative lay understandings of personality arising from the participants' lived historical experiences (which may not conform to any existing theories) are highly individualized and value laden. Systematic study of the patients' and care partners' experiences of changes in their most valued personality characteristics is ethically imperative and central to informed consent. The proposed study will employ a mixed methodology incorporating qualitative and quantitative analyses of three groups of 50 patients with PD and their care partners (patients within one year of diagnosis, within 5 -7 years of diagnosis, and those undergoing DBS). Semi-structured interviews will be conducted to identify the core personality characteristics patients and care partners most fear losing (e.g., extroversion, humility). These data will be supplemented with visual analogue scales derived from the qualitative data as well as standard personality and PD-specific metrics. The data from the proposed study will illuminate participant's most valued personality characteristics, identify if existing measure capture those characteristics, illustrate if PD results in changes in perceived personality, demonstrate the concordance between patients' and care partners' ratings of perceived personality change, and confirm if DBS results in changes in individually meaningful personality characteristics. These data have profound implications for the identification/development of measures that mirror patients' values; will contribute to a novel iterative informed consent process that includes systematic assessment of patient's values, goals and perceived personality changes; will inform philosophical and public discussions of identity and autonomy in the context of DBS; and, most importantly, may allow clinicians to ease needless fears.

项目摘要 在我们治疗神经系统疾病患者的工作中，我们经常遇到害怕的患者和家属。 他们担心，由于他们的神经退行性疾病或潜在的治疗，如神经外科手术， 他们将不再是“他们是谁”。临床医生通常将该结构称为 思维、感觉和行为的个性或特征模式。存在争议和不确定性 关于脑深部电刺激（DBS）治疗后人格变化的性质和程度 帕金森病（PD）拟议的研究系统地探讨了患者和护理伙伴的（例如， 家庭成员、朋友）的观点和经验， 在PD的不同阶段和DBS的过程中，最看重的个性特征。这些叙事 从参与者的生活历史经验中产生的对人格的外行理解（可能不 符合任何现有的理论）是高度个性化和价值负载。系统研究患者的 和照顾伙伴的经验，改变他们最重视的个性特征是道德上的 这是知情同意的必要条件和核心。拟议的研究将采用混合方法 对三组50例PD患者及其护理进行定性和定量分析 伴侣（诊断后1年内、诊断后5 - 7年内以及接受DBS治疗的患者）。 将进行半结构化访谈，以确定患者的核心人格特征和护理 伴侣最害怕失去（例如，外向，谦逊）。这些数据将补充视觉模拟 从定性数据以及标准个性和PD特定指标中得出的量表。的数据 这项拟议中的研究将阐明参与者最有价值的个性特征， 测量捕获这些特征，说明PD是否导致感知人格的变化，证明 患者和护理伙伴对感知人格变化的评分之间的一致性，并确认 DBS导致个体有意义的人格特征的变化。这些数据具有深刻的 对识别/制定反映患者价值观的措施的影响;将有助于 新的迭代知情同意过程，包括系统评估患者的价值观，目标和 感知到的个性变化;将告知哲学和公共讨论的身份和自主权， DBS的背景;最重要的是，可以让临床医生减轻不必要的恐惧。