帕金森病诊断影响调查:患者、护理人员和医护人员的观点

Stela Dodaj, Margherita Fabbri, Anne Doé de Maindreville, Alexandra Foubert-Samier, Marie-Claire Toussaint, Nicolas Carrière, Jeanne Lopez, Marine Giroud, Virginie Sattler, A. Gerdelat, Guillaume Baille, Jean Denis Turc, Christel Barthelemy, Charlotte Scotto d Apollonia, Marie Helene Fabre, Elina Eytier, Claire Thierez, Frédérique Fluchère, F. Ory-Magne
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摘要

背景:宣布帕金森病(PD)诊断结果可能会引发负面情绪,影响患者应对疾病的能力以及与这一新疾病相关的所有生活变化。关于如何改善帕金森病诊断的沟通以及哪些因素可能会影响这一结果,目前还缺乏相关数据。研究方法我们在法国进行了一项全国性调查,调查了诊断公告对大量最近接受诊断(自诊断后≤1年)的帕金森病患者(PwPD)、相关护理人员和来自三级医院和社区医院的医疗保健专业人员(HCPs)的影响。结果:共有 397 名患者(45% 为女性,82% 年龄大于 50 岁)、192 名护理人员和 120 名医护人员(69% 为神经科医生)完成了问卷调查。约 60% 的残疾人对诊断结果始料未及,其中大多数人(82%)对诊断结果产生了负面情绪。患者在诊断结果公布时的负面情绪与男性[OR = 2.034,CI 95% 1.09-3.78;p = 0.025]和年龄[OR = 1.05,CI 95% 1.01-1.08;p = 0.004]有关,而震颤作为首发症状具有临界意义[OR = 1.78,CI 95% 0.994-3.187;p = 0.052]。半数患者和照护者认为他们没有获得足够的信息,三分之一的患者和照护者进行了短期预约以重新讨论诊断。共有 82% 的残疾人表示愿意接受多学科随访(残疾人护理师、心理学家)。只有 24% 的初级保健人员接受过 PD 公告培训。结论提供帕金森病诊断的方式是残疾人和护理人员人生旅途中的关键时刻。这一过程需要通过参与式方法加以改进,以弥补残疾人、护理人员和保健专业人员所表达的不足。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Survey on Parkinson’s Disease Diagnosis Impact: Patients, Caregivers and Health Care Professionals’ Perspectives
Background: The announcement of Parkinson’s disease (PD) diagnosis may provoke negative feelings that impact the ability to cope with the disease and all life changes related to this new condition. There are scarce data on how to improve communication about PD diagnosis and which factors may influence this outcome. Methods: We performed a national French survey, investigating the diagnosis announcement impact on a large population of people living with PD (PwPD), who recently received the diagnosis (≤1 year since PD diagnosis), and on related caregivers and health care professionals (HCPs), from tertiary and community-based hospitals. Results: A total of 397 PwPD (45% female and 82% > 50 years old), 192 caregivers and 120 HCPs (69% neurologists) completed the questionnaire. The diagnosis was not expected by about 60% of PwPD and induced negative feelings in the majority (82%) of them. Negative feelings that PwPD experience in the moment of the diagnosis announcement were related with male gender [OR = 2.034, CI 95% 1.09–3.78; p = 0.025] and older age [OR = 1.05, CI 95% 1.01–1.08; p = 0.004], while tremor as the first symptom had a threshold significance [OR = 1.78, CI 95% 0.994–3.187; p = 0.052]. Half of the PwPD and caregivers considered that they did not receive enough information and one third had a short-term appointment to rediscuss the diagnosis. A total of 82% of PwPD expressed the willingness to have a multidisciplinary follow-up (PD nurse, psychologists). Only 24% of the HCPs had been trained for PD announcement. Conclusions: The way a PD diagnosis is delivered represents a pivotal moment in the journey of PwPD and caregivers. This process requires improvement in addressing the gaps expressed by PwPD, caregivers, and HCPs through a participatory approach.
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