Health Information and Quality Authority, Dublin, Ireland.
Melbourne School of Population and Global Health, University of Melbourne, Melbourne, Australia.
Value Health. 2023 Nov;26(11):1655-1664. doi: 10.1016/j.jval.2023.07.002. Epub 2023 Jul 27.
A range of preference-based quality of life (QoL) measures have been proposed for use with informal carers. Qualitative evaluation of validity and feasibility of the measures is an important step in understanding whether measures will work as intended. At present, little is known about the performance of different types of preference-based QoL measures with informal carers. The objective of this study was to qualitatively assess the feasibility, content validity (including face validity), and acceptability of 5 QoL measures (the Carer Experience Scale, CarerQoL-7D, ASCOT-C, ICECAP-A, and EQ-5D-5L) with informal carers.
A total of 24 "think-aloud" interviews were conducted with a cross-section of carers of adults in the United Kingdom. This think-aloud process was followed by semistructured discussion to probe issues of validity and feasibility in more detail. The interview data were transcribed, coded to identify the frequency of errors in completing the QoL measures and thematically analyzed to study the validity, feasibility, and acceptability of the measures.
Few errors (3%-7% per item) were identified in completing each of the measures with little distinct pattern. Most participants found the measures to be concise, clear, and relevant. Challenges included relevance, context, time period, missing items, multiple questions, and response options. Informal carers generally expressed a preference for using a care-related QoL measure.
Existing preference-based QoL measures have encouraging validity and feasibility within a mixed sample of informal carers, with minor challenges raised. These challenges ought to be considered, alongside the decision context, when administering QoL measures in this context.
已经提出了一系列基于偏好的生活质量（QoL）衡量标准，供非正式照顾者使用。对这些衡量标准的有效性和可行性进行定性评估是了解这些衡量标准是否能按预期发挥作用的重要步骤。目前，对于不同类型的基于偏好的 QoL 衡量标准在非正式照顾者中的表现知之甚少。本研究的目的是定性评估 5 种 QoL 衡量标准（照顾者体验量表、照顾者 QoL-7D、ASCOT-C、ICECAP-A 和 EQ-5D-5L）在非正式照顾者中的可行性、内容有效性（包括表面有效性）和可接受性。
对英国成年照顾者进行了横断面的共 24 次“出声思考”访谈。在这个出声思考过程之后，进行了半结构化讨论，以更详细地探究有效性和可行性问题。访谈数据被转录、编码，以识别完成 QoL 衡量标准时的错误频率，并进行主题分析，以研究衡量标准的有效性、可行性和可接受性。
在完成每项衡量标准时，只发现了很少的错误（每个项目 3%-7%），且没有明显的模式。大多数参与者认为这些衡量标准简洁、清晰且相关。挑战包括相关性、背景、时间段、缺失项目、多个问题和应答选项。非正式照顾者普遍表示更愿意使用与护理相关的 QoL 衡量标准。
在混合的非正式照顾者样本中，现有的基于偏好的 QoL 衡量标准具有令人鼓舞的有效性和可行性，但也提出了一些小的挑战。在这种情况下，当管理 QoL 衡量标准时，应当考虑这些挑战以及决策背景。
