Aim:

Informal caregivers play a vital role in the care of people with Alzheimer’s Disease (AD), yet caregiving is associated with caregivers’ burden. The initial objective of the study was to develop a new outcome measure to assess quality of life (QoL) in AD caregivers.

Methods:

Informal (non-professional) caregivers providing 75% or more of the care activities for, and living in the same household as, a person with AD were invited to take part in the study. Qualitative interviews (N = 40) were conducted with AD caregivers in the UK and thematic analyses were applied to generate a pool of potential items. A draft questionnaire was produced and adapted for use in Italy, Spain, Germany and the US. In each of the 5 countries, cognitive debriefing interviews (N = 76) were conducted to determine the questionnaire’s face and content validity, followed by a postal validation survey (N = 268). The data from these surveys were combined to reduce the number of items and assess the new questionnaire’s psychometric properties.

Results:

Thematic analysis of the UK interview transcripts generated a draft questionnaire, which was successfully translated into each additional language. The items were well accepted and easy to complete. However, reanalysis of the qualitative interview data revealed that spousal and non-spousal caregivers identified different experiences of caregiving. A review of the item pool indicated that items were primarily targeted at spousal caregivers. Therefore, further analyses of the postal survey data included spousal caregivers only (n = 116). The results supported scaling assumptions (e.g., corrected item-total correlations ≥0.32), targeting (e.g., floor/ceiling effects <2.5%), internal consistency (α ≥0.93) and test-retest reliability (r_s = 0.88) of the new questionnaire, according to classical test theory. Assessment of external construct validity yielded results in accordance with a priori expectations. QoL scores were most strongly related to scores on the emotional reactions sections of the Nottingham Health Profile and the General Well-Being Index. The new questionnaire was found to be capable of detecting meaningful differences between respondents; spousal caregivers had worse QoL when the person with AD was confused (p < .001), could not be left alone (p < .001), did not recognize the caregiver (p < .001), was incontinent (p < .05), and wandered around the house (p = .01).

Conclusions:

The Alzheimer’s Disease Patient Partners Life Impact Questionnaire (APPLIQue) is a questionnaire specific to spousal caregivers of people with AD. Data support its scaling assumptions and it exhibits excellent psychometric properties according to classical test theory. The questionnaire is recommended for use in intervention studies where the QoL of spousal caregivers is of interest.

中文翻译：

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阿尔茨海默氏症患者伴侣生命影响调查表（APPLIQue）的国际开发。

目标：

非正式护理人员在阿尔茨海默氏病（AD）患者的护理中起着至关重要的作用，但是护理却与护理人员的负担有关。该研究的最初目标是开发一种新的结局指标，以评估AD照护者的生活质量（QoL）。

方法：

邀请为AD患者提供75％或更多的护理活动并与AD住在同一家庭的非正式（非专业）护理人员参加该研究。在英国对AD照护者进行了定性访谈（N = 40），并进行了主题分析，以收集潜在项目。编制了一份调查表草案，并作了修改，供意大利，西班牙，德国和美国使用。在这5个国家/地区中的每个国家，进行了认知情况汇报访谈（N = 76），以确定问卷的面孔和内容有效性，然后进行邮政验证调查（N = 268）。这些调查的数据被合并以减少项目的数量，并评估新问卷的心理测量特性。

结果：

对英国采访记录的主题分析产生了一份调查表草案，该调查表已成功翻译成其他每种语言。这些项目已被广泛接受并且易于完成。然而，对定性访谈数据的重新分析显示，配偶和非配偶的照料者确定了不同的照料经历。对项目库的审查表明，这些项目主要针对配偶照顾者。因此，对邮政调查数据的进一步分析仅包括配偶照顾者（n = 116）。结果支持缩放假设（例如，校正后的项目与总相关性≥0.32），目标（例如，地板/天花板效应<2.5％），内部一致性（α≥0.93）和重测信度（r _s）= 0.88），根据经典测试理论。外部结构有效性的评估产生了符合先验期望的结果。QoL得分与诺丁汉健康档案和一般幸福指数中的情绪反应部分得分最相关。发现新的调查表能够发现受访者之间的有意义的差异；当AD患者感到困惑时（p <.001），不能被单独留着（p <.001），不能识别护理者（p <.001），失禁（p <.05），配偶护理人员的生活质量较差。 ），然后在房子周围徘徊（p = .01）。

结论：

阿尔茨海默氏病患者伴侣生活影响调查表（APPLIQue）是专门针对AD患者配偶照顾者的问卷。数据支持其缩放假设，并且根据经典测试理论显示出出色的心理测量特性。建议将该问卷用于对配偶照顾者的QoL感兴趣的干预研究中。