Caring Futures Institute, College of Nursing and Health Sciences, Flinders University, Australia.
Rehabilitation, Aged and Palliative Care Service, Southern Adelaide Local Health Network, Australia.
Dementia (London). 2024 Nov;23(8):1354-1381. doi: 10.1177/14713012241272823. Epub 2024 Aug 8.
The prevalence of dementia is increasing globally, with an estimated 139 million people expected to be living with dementia by 2050. Across numerous countries, substandard care for people with dementia is evident, with quality improvement needed. Recently, a focus on patient-reported experience measures (PREMs) has been utilised in healthcare services as a method of evaluating the care experiences provided and determining areas of improvement. The literature is scarce regarding the feasibility and acceptability of implementing PREMs with people with moderate to advanced dementia. This scoping review aimed to identify PREMs that have been used with vulnerable populations including people with cognitive impairment, mental health concerns, and children, outline dimensions included, and determine adaptions made to the PREMs to improve acceptability of the instruments for vulnerable populations. A database search of Medline was conducted to identify 36 studies including 32 PREMs. The PREMs identified covered a range of dimensions, most frequently care effectiveness, care environment, and patient involvement. The most common adaption to the PREMs was simplification of wording and sentence structure. Several measures conflated patient outcomes and patient satisfaction with patient experience, limiting utility for improving patient experience specifically. While several PREMs have been used with people with dementia, challenges in their implementation and their applicability to specific settings limit their use more broadly. Evidently, there is a need for development of a PREM for people with moderate to advanced dementia that is applicable across healthcare settings and is appropriately adapted for varying cognitive and communicative barriers.
痴呆症的患病率在全球范围内不断上升，预计到 2050 年，全球将有 1.39 亿人患有痴呆症。在许多国家，痴呆症患者的护理质量都存在不足，需要进行质量改进。最近，人们关注患者报告的体验测量（PREMs），将其作为评估所提供护理体验和确定改进领域的一种方法应用于医疗保健服务中。关于在中度至重度痴呆症患者中实施 PREMs 的可行性和可接受性的文献很少。本范围综述旨在确定已用于包括认知障碍、心理健康问题和儿童在内的弱势群体的 PREMs，概述包含的维度，并确定为提高弱势群体对这些工具的接受度而对 PREMs 进行的调整。对 Medline 数据库进行了检索，以确定包括 32 项 PREMs 在内的 36 项研究。确定的 PREMs 涵盖了一系列维度，最常见的是护理效果、护理环境和患者参与度。对 PREMs 最常见的调整是简化措辞和句子结构。有几个措施将患者的治疗效果和患者满意度与患者体验混为一谈，限制了其在专门改善患者体验方面的应用。尽管已经有一些 PREMs 用于痴呆症患者，但在实施过程中存在挑战，并且在特定环境中的适用性有限，这限制了它们的广泛应用。显然，需要为中度至重度痴呆症患者开发一种适用于各种医疗保健环境且针对不同认知和沟通障碍进行适当调整的 PREM。
