对MY PDCARE数字工具的可用性、可理解性和接受度的人种学评估，以促进帕金森病症状跟踪以及患者和护理伙伴与治疗保健专业人员的沟通：自我意识研究

IF 2.4 4区医学 Q2 CLINICAL NEUROLOGY

Neurological Sciences Pub Date : 2025-10-01 Epub Date: 2025-07-18 DOI:10.1007/s10072-025-08342-0

Angelo Antonini, Tove Henriksen, Amelia Hursey, Lars Bergmann, Juan Carlos Parra, Per Odin

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引用次数: 0

摘要

背景和目的：MY PD- care数字工具旨在使帕金森病（PD）患者和护理伙伴能够积极识别和跟踪进展中的PD关键症状的变化，并促进与医疗保健专业人员（HCPs）的讨论。MY PD-CARE改编自MANAGE-PD，这是一种经过验证的基于网络的工具，可帮助医护人员识别症状控制不足的患者。SELF-AWARE（民族志研究和人为因素评估研究，用于提高口服药物不受控制的PD患者的认识、自我评估和报告的工具）研究调查了MY PD- care在PD患者及其护理伙伴中的易用性、可理解性和接受度。方法：SELF-AWARE是一项非干预性、横断面、观察性研究。参与者（患者/护理伙伴）在由训练有素的医学人类学家使用定性人种志和人为因素评估方法进行的1次虚拟访谈中评估了MY PD-CARE。结果：90.7%的受访患者（43例）；31名护理伙伴)，≥1名患者/护理伙伴参与者对技术感到满意。大多数参与者理解MY PDCARE的目的/目标，并同意它简单易用。尽管对许多参与者来说，医学术语并不完全是不言自明的，但有一半人认为术语表很有帮助。大约60%的人表示MY PDCARE在自由文本输入方面可能更有价值。与会者一致认为，MY PD-CARE对于追踪症状和鼓励与医务人员进行讨论很有用。结论：PD患者及其护理伙伴认为MY PD- care对于跟踪和提高症状意识以及促进与HCPs的讨论是有用和可接受的。参与者的反馈有助于优化这个数字工具的更新设计。

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Ethnographic evaluation of usability, understandability, and acceptance of the MY PD-CARE digital tool to facilitate Parkinson's disease symptom tracking and patients' and care partners' communications with the treating healthcare professional: the SELF-AWARE study.

Background and aim: The MY PD-CARE digital tool is intended to empower people with Parkinson's disease (PD) and care partners to actively identify and track changes in key symptoms of advancing PD and to facilitate discussions with healthcare professionals (HCPs). MY PD-CARE was adapted from MANAGE-PD, a validated, web-based tool that helps HCPs identify patients with inadequate symptom control. The SELF-AWARE (Study on Ethnographic research and human factors evaLuation For a tool to increase AWareness, self-Assessment, and Reporting of PD patiEnts uncontrolled on oral medication) study investigated MY PD-CARE ease of use, understandability, and acceptance among people with PD and their care partners.

Methods: SELF-AWARE was a non-interventional, cross-sectional, observational study. Participants (patients/care partners) assessed MY PD-CARE during 1-time virtual interviews conducted by trained medical anthropologists using qualitative ethnographic and human factor evaluation methods.

Results: In 90.7% of interviews (43 patients; 31 care partners), ≥ 1 patient/care partner participant was comfortable with technology. Most participants understood the purpose/objective of MY PD-CARE and agreed it was simple and easy to use. Although the medical terminology was not fully self-explanatory to many participants, half found the glossary helpful. Approximately 60% indicated MY PD-CARE could have more value with free-text input. Participants agreed that MY PD-CARE is useful for tracking symptoms and encouraging discussions with HCPs.

Conclusions: People with PD and their care partners perceived MY PD-CARE as useful and acceptable for tracking and increasing awareness of symptoms and facilitating discussions with HCPs. Participant feedback helped optimize the updated design of this digital tool.

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来源期刊

Neurological Sciences 医学-临床神经学

CiteScore

6.10

自引率

3.00%

发文量

743

审稿时长

4 months

期刊介绍： Neurological Sciences is intended to provide a medium for the communication of results and ideas in the field of neuroscience. The journal welcomes contributions in both the basic and clinical aspects of the neurosciences. The official language of the journal is English. Reports are published in the form of original articles, short communications, editorials, reviews and letters to the editor. Original articles present the results of experimental or clinical studies in the neurosciences, while short communications are succinct reports permitting the rapid publication of novel results. Original contributions may be submitted for the special sections History of Neurology, Health Care and Neurological Digressions - a forum for cultural topics related to the neurosciences. The journal also publishes correspondence book reviews, meeting reports and announcements.