Supplementary Material for: Quality of Life Assessment in Older Adults with Dementia: A Systematic Review

Introduction: In the absence of a cure, dementia is often managed by minimizing risk factors contributing to quality of life (QOL). Attitudes to dementia in older adults may differ from those in relatively younger adults. The aim was to conduct a systematic review of the literature to determine how QOL was assessed in adults, 65 years and older with dementia, and identify factors that influence the reported scores. Methods: A systematic review of full-text articles addressing QOL in older adults with dementia, published in English from January 1995 to September 2020, was conducted using PubMed and PsycINFO. We included studies that assessed QOL and involved participants 65 years and older. Studies were evaluated for inclusion by 2 independent pairs of reviewers. We assessed the quality of the studies using the Joanna Briggs Institute’s Critical Appraisal Checklist. Study characteristics and findings were summarized. Analysis was by narrative synthesis. We identified social and clinical factors influencing QOL scores. Results: Of the 1,010 articles identified, 19 met the inclusion criteria. These 19 studies involved 6,279 persons with dementia, with sample sizes from 32 to 1,366. Mean age of participants ranged from 77.1 to 86.6 years. Five measurement tools were identified; Quality of Life in Alzheimer Disease (QOL-AD), Alzheimer Disease-Related Quality of Life (ADRQL), Quality of Life in Late-Stage Dementia (QUALID), QUALIDEM (a dementia-specific QOL tool), and DEMQOL (health-related QOL for people with dementia). Self-ratings of QOL were higher than proxy ratings. Factors commonly influencing self-ratings of QOL included depression, functional impairment, and polypharmacy. Common factors that influenced proxy ratings included functional impairment, presence of neuropsychiatric symptoms, cognitive impairment, and caregiver burden. Conclusion: In evaluating QOL in dementia, self- and proxy reports may complement each other to ensure that all perspectives are addressed.

引言：目前尚无治愈手段，痴呆的临床管理通常通过管控影响生活质量（Quality of Life, QOL）的风险因素来实现。老年群体与相对年轻群体对痴呆的认知态度存在差异。本研究旨在开展系统文献综述，明确65岁及以上痴呆成人的QOL评估方式，并识别影响其报告得分的相关因素。方法：本研究通过PubMed与PsycINFO数据库，检索1995年1月至2020年9月期间发表的英文全文文献，针对老年痴呆患者的QOL相关研究开展系统综述。纳入标准为：研究需评估QOL，且研究对象为65岁及以上人群。由2组独立的审稿人分别对文献进行纳入评估；采用乔安娜·布里格斯研究所关键评价清单（Joanna Briggs Institute’s Critical Appraisal Checklist）对纳入研究的质量进行评价。对研究特征与研究结果进行汇总，并采用叙述性综合法开展分析，最终识别出影响QOL得分的社会与临床因素。结果：在检索到的1010篇文献中，共有19篇符合纳入标准。这19项研究共纳入6279名痴呆患者，样本量范围为32至1366例，研究对象的平均年龄跨度为77.1岁至86.6岁。共识别出5种评估工具：阿尔茨海默病患者生活质量量表（Quality of Life in Alzheimer Disease, QOL-AD）、阿尔茨海默病相关生活质量量表（Alzheimer Disease-Related Quality of Life, ADRQL）、晚期痴呆患者生活质量量表（Quality of Life in Late-Stage Dementia, QUALID）、专用痴呆患者生活质量量表QUALIDEM（QUALIDEM）以及痴呆患者健康相关生活质量量表DEMQOL（DEMQOL）。患者自身报告的QOL得分高于照料者代理报告得分。影响患者自我报告QOL的常见因素包括抑郁、功能障碍与多重用药；影响代理报告QOL的常见因素包括功能障碍、神经精神症状、认知障碍以及照料者负担。结论：在评估痴呆患者的QOL时，患者自我报告与照料者代理报告可互为补充，以确保全面覆盖各类研究视角。