Antonini Angelo, Henriksen Tove, Hursey Amelia, Bergmann Lars, Parra Juan Carlos, Odin Per
Neurodegenerative Disease Unit, Department of Neuroscience, Padua Neuroscience Center (PNC), University of Padova, Padova, Italy.
Movement Disorder Clinic, University Hospital of Bispebjerg, Copenhagen, Denmark.
Neurol Sci. 2025 Jul 18. doi: 10.1007/s10072-025-08342-0.
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.
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.
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 PDCARE 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 PDCARE could have more value with free-text input. Participants agreed that MY PD-CARE is useful for tracking symptoms and encouraging discussions with HCPs.
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.
MY PD-CARE数字工具旨在帮助帕金森病（PD）患者及其护理伙伴积极识别并追踪PD进展过程中关键症状的变化，促进他们与医疗保健专业人员（HCPs）的沟通。MY PD-CARE改编自MANAGE-PD，这是一个经过验证的基于网络的工具，可帮助HCPs识别症状控制不佳的患者。自我认知（关于人种学研究和人为因素评估的研究，旨在开发一种工具以提高对口服药物控制不佳的PD患者的认知、自我评估和报告能力）研究调查了MY PD-CARE在PD患者及其护理伙伴中的易用性、易懂性和可接受性。
自我认知研究是一项非干预性、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进行的1次虚拟访谈中，使用定性人种学和人为因素评估方法对MY PD-CARE进行评估。
在90.7%的访谈中（43名患者；31名护理伙伴），≥1名患者/护理伙伴参与者对技术操作感到得心应手。大多数参与者理解MY PDCARE的目的/目标，并认为它简单易用。尽管许多参与者对医学术语不能完全自行理解，但一半的人认为术语表很有帮助。约60%的人表示，有自由文本输入功能的MY PDCARE会更有价值。参与者一致认为，MY PD-CARE有助于追踪症状，并鼓励与HCPs进行沟通。
PD患者及其护理伙伴认为MY PD-CARE对于追踪症状、提高症状认知以及促进与HCPs的沟通是有用且可接受的。参与者的反馈有助于优化该数字工具的更新设计。
