背景:向早期阿尔茨海默病(AD)阶段和个性化医疗的范式转变为临床医生与患者的沟通带来了新的挑战。我们在欧洲记忆临床专业人员中进行了一项调查,以确定有关(病因)诊断的交流意见,预后,和预防,以及增加沟通技巧的库存需求。
方法:来自21个欧洲国家的记忆诊所专业人员(N=160)完成了我们的在线调查(59%为女性,14±10年的经验,73%在学术医院工作)。我们列出了(1)关于(病因)诊断的沟通意见,预后,并使用11种陈述进行预防;(2)针对5例假设病例的当前沟通实践(AD痴呆症,轻度认知障碍(MCI),主观认知能力下降(SCD),有()或没有(-)异常AD生物标志物);(3)需要有关十种列出的沟通技巧的沟通支持。
结果:大多数专业人员都同意关于诊断的沟通,预后,和预防应该是个性化的个体患者。为了回应假设的病人病例,疾病阶段影响了传达病因AD诊断的倾向:97%的患者会明确提到AD痴呆的存在,68%的人会在MCI+中这样做,和29%的SCD+。此外,58%的人会明确排除在MCI的情况下的AD-当与患者交谈时,在SCD的情况下,为69%。几乎所有的专业人士(79-99%)表示与所有患者讨论预后和预防,其中很大一部分(48-86%)将个性化他们与患者的诊断测试结果(39-68%)或患者的记忆信息(33-82%)的交流。大多数临床医生(79%)希望使用在线工具,培训,或者两者都支持他们与患者沟通。专业人员最希望获得支持的主题是:刺激患者对信息的理解,和传达不确定性,痴呆风险,远程/在线,并且患者不(流利地)说居住国的语言。
结论:在对欧洲记忆诊所专业人员的调查中,我们发现与患者就(病因)诊断进行交流的态度非常积极,预后,和预防,和个性化的沟通特点和个别患者的需求。此外,专业人员表示需要支持工具和技能培训,以进一步改善与患者的沟通。
The paradigm shift towards earlier Alzheimer\'s disease (AD) stages and personalized medicine creates new challenges for clinician-patient communication. We conducted a survey among European memory clinic professionals to identify opinions on communication about (etiological) diagnosis, prognosis, and prevention, and inventory needs for augmenting communication skills.
Memory clinic professionals (N = 160) from 21 European countries completed our online survey (59% female, 14 ± 10 years\' experience, 73% working in an academic hospital). We inventoried (1) opinions on communication about (etiological) diagnosis, prognosis, and prevention using 11 statements; (2) current communication practices in response to five hypothetical cases (AD dementia, mild cognitive impairment (MCI), subjective cognitive decline (SCD), with ( +) or without ( -) abnormal AD biomarkers); and (3) needs for communication support regarding ten listed communication skills.
The majority of professionals agreed that communication on diagnosis, prognosis, and prevention should be personalized to the individual patient. In response to the hypothetical patient cases, disease stage influenced the inclination to communicate an etiological AD diagnosis: 97% would explicitly mention the presence of AD to the patient with AD dementia, 68% would do so in MCI + , and 29% in SCD + . Furthermore, 58% would explicitly rule out AD in case of MCI - when talking to patients, and 69% in case of SCD - . Almost all professionals (79-99%) indicated discussing prognosis and prevention with all patients, of which a substantial part (48-86%) would personalize their communication to patients\' diagnostic test results (39-68%) or patients\' anamnestic information (33-82%). The majority of clinicians (79%) would like to use online tools, training, or both to support them in communicating with patients. Topics for which professionals desired support most were: stimulating patients\' understanding of information, and communicating uncertainty, dementia risk, remotely/online, and with patients not (fluently) speaking the language of the country of residence.
In a survey of European memory clinic professionals, we found a strong positive attitude towards communication with patients about (etiological) diagnosis, prognosis, and prevention, and personalization of communication to characteristics and needs of individual patients. In addition, professionals expressed a need for supporting tools and skills training to further improve their communication with patients.