Abstract：
BACKGROUND: The aim of our study was to find out the opinion of patients with Parkinson\'s Disease (PD) whose disease was preceded by REM sleep behaviour disorder (RBD) regarding early information about the high risk of phenoconversion in RBD.
OBJECTIVE: RBD is an early clinical manifestation of α-synucleinopathies with a more than 90% risk of phenoconversion to PD, dementia with Lewy bodies (DLB) or multiple system atrophy (MSA). It remains a subject for debate as to whether and how RBD patients should be informed about the high risk of phenoconversion. The patient\'s right to full knowledge regarding his or her health conflicts with the potentially destructive impact of this information on his or her mental state and quality of life of them and their relatives.
METHODS: Thirty-nine patients with PD whose disease was preceded by RBD were surveyed. Data on the course of RBD and PD was collected. Questions were asked about early information about the high risk of phenoconversion to patients with RBD and factors determining the opinion of the surveyed persons.
RESULTS: The majority ( > 60%) of respondents gave a positive answer when asked whether patients should be informed about their high risk of developing PD once diagnosed with RBD. Only a few (7.7%) respondents believed that disclosing such information to the patient should be possible only after obtaining his or her consent. Respondents associated consent to information about the high risk of developing PD in people with RBD with high expectations of the healthcare system. We were unable to determine whether factors such as the gender of the subject, the clinical course of the PD, and the RBD duration had an impact on patients\' opinions regarding disclosing knowledge about phenoconversion.
CONCLUSIONS: Our study provides important information that should influence physicians\' communication with patients with RBD, especially regarding how they communicate about the high risk of phenoconversion.
OBJECTIVE: RBD is an early clinical manifestation of α-synucleinopathies with a more than 90% risk of phenoconversion to PD, dementia with Lewy bodies (DLB) or multiple system atrophy (MSA). It remains a subject for debate as to whether and how RBD patients should be informed about the high risk of phenoconversion. The patient\'s right to full knowledge regarding his or her health conflicts with the potentially destructive impact of this information on his or her mental state and quality of life of them and their relatives.
METHODS: Thirty-nine patients with PD whose disease was preceded by RBD were surveyed. Data on the course of RBD and PD was collected. Questions were asked about early information about the high risk of phenoconversion to patients with RBD and factors determining the opinion of the surveyed persons.
RESULTS: The majority ( > 60%) of respondents gave a positive answer when asked whether patients should be informed about their high risk of developing PD once diagnosed with RBD. Only a few (7.7%) respondents believed that disclosing such information to the patient should be possible only after obtaining his or her consent. Respondents associated consent to information about the high risk of developing PD in people with RBD with high expectations of the healthcare system. We were unable to determine whether factors such as the gender of the subject, the clinical course of the PD, and the RBD duration had an impact on patients\' opinions regarding disclosing knowledge about phenoconversion.
CONCLUSIONS: Our study provides important information that should influence physicians\' communication with patients with RBD, especially regarding how they communicate about the high risk of phenoconversion.
摘要：
背景：我们研究的目的是了解帕金森病（PD）患者的早期信息，其疾病先于REM睡眠行为障碍（RBD），对RBD中表型转换高风险的早期信息。
目的：RBD是α-突触核蛋白病的早期临床表现，其表型转化为PD的风险超过90％，路易体痴呆（DLB）或多系统萎缩（MSA）。关于是否以及如何告知RBD患者表型转化的高风险，仍然是一个值得争论的话题。患者充分了解其健康的权利与该信息对其及其亲属的精神状态和生活质量的潜在破坏性影响相冲突。
方法：对39例先有RBD的PD患者进行调查。收集关于RBD和PD的过程的数据。询问了有关RBD患者的表型转换高风险的早期信息以及决定受调查者意见的因素。
结果：当被问及一旦诊断为RBD，患者是否应被告知其发展为PD的高风险时，大多数（>60％）的受访者给出了肯定的回答。只有少数（7.7％）的受访者认为，只有在获得患者同意后才能向患者披露此类信息。受访者同意有关RBD患者发生PD的高风险的信息，并对医疗保健系统抱有很高的期望。我们无法确定受试者的性别等因素是否，PD的临床过程，RBD持续时间对患者关于表型转换知识披露的意见有影响。
结论：我们的研究提供了重要的信息，这些信息应该影响医生与RBD患者的沟通，特别是关于他们如何沟通表型转化的高风险。
目的：RBD是α-突触核蛋白病的早期临床表现，其表型转化为PD的风险超过90％，路易体痴呆（DLB）或多系统萎缩（MSA）。关于是否以及如何告知RBD患者表型转化的高风险，仍然是一个值得争论的话题。患者充分了解其健康的权利与该信息对其及其亲属的精神状态和生活质量的潜在破坏性影响相冲突。
方法：对39例先有RBD的PD患者进行调查。收集关于RBD和PD的过程的数据。询问了有关RBD患者的表型转换高风险的早期信息以及决定受调查者意见的因素。
结果：当被问及一旦诊断为RBD，患者是否应被告知其发展为PD的高风险时，大多数（>60％）的受访者给出了肯定的回答。只有少数（7.7％）的受访者认为，只有在获得患者同意后才能向患者披露此类信息。受访者同意有关RBD患者发生PD的高风险的信息，并对医疗保健系统抱有很高的期望。我们无法确定受试者的性别等因素是否，PD的临床过程，RBD持续时间对患者关于表型转换知识披露的意见有影响。
结论：我们的研究提供了重要的信息，这些信息应该影响医生与RBD患者的沟通，特别是关于他们如何沟通表型转化的高风险。
