Donnelly Paula Sinead, Sweeney Aoife, Passmore Anthony P, McCorry Noleen K, Kane Joseph P M
Centre for Public Health, Queen's University Belfast, Institute of Clinical Science B, Royal Victoria Hospital, Grosvenor Road, Belfast, BT12 6BA, UK.
Alzheimers Res Ther. 2025 May 26;17(1):117. doi: 10.1186/s13195-025-01760-4.
Dementia with Lewy bodies (DLB) is associated with specific challenges, including heterogeneity in clinical presentation and a less favourable prognosis relative to other dementia subtypes. These challenges necessitate person-centred care informed by the perspectives of those affected by DLB. This scoping review aimed to map the extent, type, and nature of research focusing on the perspectives of individuals with DLB and their care partners.
We searched six databases and two grey literature sources to identify all types of work providing information on the perspectives of individuals with DLB and/or their care partners. Two reviewers independently applied study selection criteria. Data from eligible articles were extracted, charted, and summarised using descriptive numerical analysis and basic qualitative content analysis. The review included 140 sources, of which 89.3% were research articles. Excluding non-structured reflections and commentary articles (n = 4), 68.4% of sources were quantitative and 65.4% were cross-sectional. The most common method of collecting perspective data was standardised measures assessing multidimensional concepts, such as caregiver burden. In total, 13 topics were identified, with 'emotional and psychological well-being' (n = 64) being the most widely investigated. There was a significant gap before the next most common topic: 'perspectives related to the symptom and illness experience' (n = 34).
While a range of methods was identified in this review, the evidence base is characterised by a predominance of standardised measures, with comparatively less use of qualitative approaches or non-standardised tools incorporating bespoke questions tailored to the study population. There was a disproportionate focus on specific topics, leading to research gaps. We recommend exploring novel methods to systematically capture perspectives in DLB cohorts, particularly on topics of highest priority to those affected.
路易体痴呆（DLB）存在一些特殊挑战，包括临床表现的异质性以及相对于其他痴呆亚型而言预后较差。这些挑战使得以患者为中心的护理变得必要，且这种护理需基于DLB患者及其照护伙伴的观点。本范围综述旨在梳理聚焦于DLB患者及其照护伙伴观点的研究范围、类型和性质。
我们检索了六个数据库和两个灰色文献来源，以识别所有提供有关DLB患者及其照护伙伴观点信息的各类研究。两名评审员独立应用研究选择标准。从符合条件的文章中提取数据，进行图表绘制，并使用描述性数值分析和基本定性内容分析进行总结。该综述纳入了140个来源，其中89.3%为研究文章。排除非结构化反思和评论文章（n = 4）后，68.4%的来源为定量研究，65.4%为横断面研究。收集观点数据最常用的方法是评估多维概念（如照护者负担）的标准化量表。总共确定了13个主题，其中“情绪和心理健康”（n = 64）是研究最为广泛的主题。在第二常见的主题“与症状和疾病体验相关的观点”（n = 34）之前存在显著差距。
尽管本综述确定了一系列方法，但证据基础的特点是标准化量表占主导，定性方法或包含针对研究人群定制的特定问题的非标准化工具使用相对较少。对特定主题的关注不成比例，导致研究存在差距。我们建议探索新方法，以系统地获取DLB队列中的观点，特别是那些对受影响者最为重要的主题。
