Johns Hopkins University School of Nursing, Baltimore, Maryland, USA.
Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA.
Alzheimers Dement. 2023 Dec;19(12):5663-5671. doi: 10.1002/alz.13354. Epub 2023 Jun 24.
Care partners are at the forefront of dementia care, yet little is known about patient portal use in the context of dementia diagnosis.
We conducted an observational cohort study of date/time-stamped patient portal use for a 5-year period (October 3, 2017-October 2, 2022) at an academic health system. The cohort consisted of 3170 patients ages 65+ with diagnosed dementia with 2+ visits within 24 months. Message authorship was determined by manual review of 970 threads involving 3065 messages for 279 patients.
Most (71.20%) older adults with diagnosed dementia were registered portal users but far fewer (10.41%) had a registered care partner with shared access. Care partners authored most (612/970, 63.09%) message threads, overwhelmingly using patient identity credentials (271/279, 97.13%).
The patient portal is used by persons with dementia and their care partners. Organizational efforts that facilitate shared access may benefit the support of persons with dementia and their care partners. Highlights Patient portal registration and use has been increasing among persons with diagnosed dementia. Two thirds of secure messages from portal accounts of patients with diagnosed dementia were identified as being authored by care partners, primarily using patient login credentials. Care partners who accessed the patient portal using their own identity credentials through shared access demonstrate similar levels of activity to patients without dementia. Organizational initiatives should recognize and support the needs of persons with dementia and their care partners by encouraging awareness, registration, and use of proper identity credentials, including shared, or proxy, portal access.
照护者是痴呆症照护的前沿力量，但对于痴呆症诊断背景下患者门户的使用情况，我们知之甚少。
我们对一个学术医疗系统在五年期间（2017 年 10 月 3 日至 2022 年 10 月 2 日）的患者门户使用情况进行了观察性队列研究。该队列包括 3170 名年龄在 65 岁及以上、被诊断为痴呆症且在 24 个月内有 2 次以上就诊的患者。通过对涉及 3065 条信息的 279 名患者的 970 个线程的手动审查，确定了消息作者身份。
大多数（71.20%）被诊断为痴呆症的老年人是注册门户用户，但只有很少一部分（10.41%）有注册的共同访问照护者。照护者撰写了大多数（612/970，63.09%）的消息线程，绝大多数（271/279，97.13%）使用患者身份凭证。
痴呆症患者及其照护者使用患者门户。促进共同访问的组织工作可能有利于痴呆症患者及其照护者的支持。
诊断为痴呆症的患者的门户注册和使用人数不断增加。从被诊断为痴呆症的患者门户账户发出的三分之二的安全消息被确定为照护者撰写的，主要使用患者登录凭证。通过共享或代理门户访问使用自己身份凭证访问患者门户的照护者，其活动水平与没有痴呆症的患者相似。组织举措应通过鼓励意识、注册和使用适当的身份凭证（包括共享或代理门户访问），认识并支持痴呆症患者及其照护者的需求。
