对于轻度认知障碍或阿尔茨海默病患者、他们的照护者以及医疗保健专业人员而言，哪些结果至关重要？一项系统综述。
What outcomes are important to patients with mild cognitive impairment or Alzheimer's disease, their caregivers, and health-care professionals? A systematic review.
作者信息
Tochel Claire, Smith Michael, Baldwin Helen, Gustavsson Anders, Ly Amanda, Bexelius Christin, Nelson Mia, Bintener Christophe, Fantoni Enrico, Garre-Olmo Josep, Janssen Olin, Jindra Christoph, Jørgensen Isabella F, McKeown Alex, Öztürk Buket, Ponjoan Anna, Potashman Michele H, Reed Catherine, Roncancio-Diaz Emilse, Vos Stephanie, Sudlow Cathie
机构信息
Centre for Medical Informatics, Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, Edinburgh, UK.
University of Oxford, Oxford, UK.
出版信息
Alzheimers Dement (Amst). 2019 Mar 7;11:231-247. doi: 10.1016/j.dadm.2018.12.003. eCollection 2019 Dec.
INTRODUCTION
Clinical trials involving patients with Alzheimer's disease (AD) continue to try to identify disease-modifying treatments. Although trials are designed to meet regulatory and registration requirements, many do not measure outcomes of the disease most relevant to key stakeholders.
METHODS
A systematic review sought research that elicited information from people with AD, their caregivers, and health-care professionals on which outcomes of the disease were important. Studies published in any language between 2008 and 2017 were included.
RESULTS
Participants in 34 studies described 32 outcomes of AD. These included clinical (memory, mental health), practical (ability to undertake activities of daily living, access to health information), and personal (desire for patient autonomy, maintenance of identity) outcomes of the disease.
DISCUSSION
Evidence elicited directly from the people most affected by AD reveals a range of disease outcomes that are relevant to them but are not commonly captured in clinical trials of new treatments.
引言
涉及阿尔茨海默病（AD）患者的临床试验一直在努力寻找疾病修饰疗法。尽管试验旨在满足监管和注册要求，但许多试验并未测量对关键利益相关者最为重要的疾病结局。
方法
一项系统综述旨在寻找从AD患者、其护理人员以及医疗保健专业人员那里获取有关哪些疾病结局很重要的信息的研究。纳入了2008年至2017年间以任何语言发表的研究。
结果
34项研究的参与者描述了32种AD结局。这些包括疾病的临床（记忆、心理健康）、实际（进行日常生活活动的能力、获取健康信息的机会）和个人（患者自主愿望、身份维持）结局。
讨论
直接从受AD影响最大的人群中获取的证据揭示了一系列与他们相关但在新疗法的临床试验中通常未被捕捉到的疾病结局。
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