Evaluating ‘living well’ with mild-to-moderate dementia: Co-production and validation of the IDEAL My Life Questionnaire
Evaluating ‘living well’ with mild-to-moderate dementia: Co-production and validation of the IDEAL My Life Questionnaire
复制标题
评估轻度至中度痴呆症的“美好生活”：共同制作和验证“理想的我的生活”问卷
DOI：
--
复制
发表时间：
2023
期刊：
影响因子：
--
通讯作者：
C. Victor
中科院分区：
文献类型：
--
作者：
L. Clare;C. Pentecost;Rachel Collins;Anthony Martyr;R. Litherland;R. Morris;C. Quinn;Laura D. Gamble;S. Sabatini;C. Victor
目标 我们的目标是共同制作并验证一份易于使用、基于证据的调查问卷，衡量痴呆症患者的“健康生活”，反映轻度至中度痴呆症患者的经历。方法 九名痴呆症患者组成一个联合制作小组。最初的一系列研讨会制定了调查问卷的格式和一长串项目清单。对 53 名 IDEAL 队列参与者进行的初步测试产生了一份候选项目清单。在另一轮数据收集过程中，对 136 名 IDEAL 队列参与者进行了测试，并评估了可靠性和有效性。联合制作小组对整个决策做出了贡献，并就最终版本达成了一致。结果 最初的 230 项列表减少为初始测试的 41 项、全面测试的 12 项和最终版本的 10 项。 10项版本具有良好的内部一致性和重测信度，并且是单因素结构。分析显示，与生活质量、幸福感和生活满意度的测量分数显着呈显着的正相关，预期的关联模式包括与抑郁分数显着的显着负相关，与认知测试分数没有关联。结论 共同制作的“我的生活问卷”是一种易于理解且有效的衡量痴呆症患者“过上好生活”的方法，适合在各种情况下使用。
Objectives We aimed to co-produce and validate an accessible, evidence-based questionnaire measuring ‘living well’ with dementia that reflects the experience of people with mild-to-moderate dementia. Methods Nine people with dementia formed a co-production group. An initial series of workshops generated the format of the questionnaire and a longlist of items. Preliminary testing with 53 IDEAL cohort participants yielded a shortlist of items. These were tested with 136 IDEAL cohort participants during a further round of data collection and assessed for reliability and validity. The co-production group contributed to decisions throughout and agreed the final version. Results An initial list of 230 items was reduced to 41 for initial testing, 12 for full testing, and 10 for the final version. The 10-item version had good internal consistency and test-retest reliability, and a single factor structure. Analyses showed significant large positive correlations with scores on measures of quality of life, well-being, and satisfaction with life, and expected patterns of association including a significant large negative association with depression scores and no association with cognitive test scores. Conclusions The co-produced My Life Questionnaire is an accessible and valid measure of ‘living well’ with dementia suitable for use in a range of contexts.