German Center for Neurodegenerative Diseases (DZNE), site Rostock/Greifswald, Greifswald, Germany.
Institute for Community Medicine, Section Epidemiology of Health Care and Community Health, University Medicine Greifswald (UMG), Greifswald, Germany.
J Alzheimers Dis. 2020;77(2):885-901. doi: 10.3233/JAD-191299.
Treatment decisions based on guidelines rather than patients' preferences determine adherence to and compliance with treatment, which, in turn, could improve health-related outcomes.
To summarize the stated treatment and care preferences of people with dementia (PwD).
A systematic review was conducted to assess the stated preferences of PwD. The inclusion criterion was the use of quantitative methods to elicit stated preferences, enabling a ranking of preferences.
Eleven studies revealed preferences for diagnostics, treatment decisions, patient-related outcomes, care services, end-of-life care, leisure activities, and digital life story work. PwDs prefer accurate, pain-free, and comfortable diagnostic procedures without radioactive markers as well as being accompanied by a caregiver. PwD's quality of life (QoL), self-efficacy, and depression were equally most important for PwD and caregivers. However, PwD memory was only important for caregivers but not for PwD, and caregiver QoL was moderately important for PwD but least important for caregivers. Additionally, comfort and family involvement were most important for patients' end-of-life care, whereas caregivers most preferred good communication and pain management. Also, preferences depend on the living situation: Patients living not alone prefer a regular care provider most, whereas those living alone only want to live nearby the caregiver. Preferences for leisure activities did not differ between past and present ratings, indicating that PwD prefer activities that have always been carried out.
Only a few studies have applied quantitative methods to elicit the preferences of PwD. More research is needed to capture the stated preferences for the treatment, care, and support of PwD to improve health-related outcomes and the allocation of healthcare resources.
基于指南而非患者偏好做出的治疗决策决定了治疗的依从性和遵从性，而这反过来又可以改善与健康相关的结果。
总结痴呆症患者（PwD）的既定治疗和护理偏好。
进行了一项系统评价，以评估 PwD 的既定偏好。纳入标准是使用定量方法引出既定偏好，从而对偏好进行排序。
11 项研究揭示了对诊断、治疗决策、患者相关结局、护理服务、临终关怀、休闲活动和数字生活故事工作的偏好。PwD 更喜欢准确、无痛和舒适的无放射性标记的诊断程序，并希望有护理人员陪伴。PwD 的生活质量（QoL）、自我效能感和抑郁对 PwD 和护理人员同等重要。然而，PwD 的记忆对护理人员很重要，但对 PwD 不重要，而护理人员的生活质量对 PwD 很重要，但对护理人员不重要。此外，舒适和家庭参与对患者临终关怀最重要，而护理人员最希望有良好的沟通和疼痛管理。此外，偏好取决于生活状况：不住在一起的患者最希望有一个固定的护理提供者，而独居的患者只希望住在护理人员附近。对休闲活动的偏好没有过去和现在的评分差异，这表明 PwD 更喜欢一直进行的活动。
只有少数研究应用定量方法来引出 PwD 的偏好。需要更多的研究来捕捉 PwD 对治疗、护理和支持的既定偏好，以改善与健康相关的结果和医疗资源的分配。
