Schwartz Carolyn E, Li Jei, Rapkin Bruce D
DeltaQuest Foundation, Inc., 31 Mitchell Road, Concord, MA, 01742, USA.
Departments of Medicine and Orthopaedic Surgery, Tufts University Medical School, Boston, MA, USA.
Qual Life Res. 2016 Sep;25(9):2201-12. doi: 10.1007/s11136-016-1258-x. Epub 2016 Mar 10.
Goals are an important basis for patients' cognitive appraisal processes underlying quality-of-life (QOL) assessment because they are the foundation to one's frame of reference. We sought to identify the best of six goal delineation items and relevant themes for two new versions of the QOL Appraisal Profile: an interview tool using a subset of the best open-ended goal delineation items, and a shorter close-ended version for use in survey research.
This is a secondary analysis of longitudinal data (n = 1126) of participants in the North American Research Committee on Multiple Sclerosis (MS) registry. The open-ended data were coded by at least two trained coders with moderately high inter-rater agreement. There were 31 themes reflecting goal content such as health, interpersonal, independence, mental health, and financial themes. Descriptive statistics identified most prevalent themes. Reliability analysis (alpha, item-total correlations) and hierarchical linear modeling identified the best goal items.
Based on these qualitative and quantitative analyses, Solve (item 2) is the best single item because it is clear anchor for about a third of the goal themes, and explains the most variance in outcomes and demographic characteristics, suggesting that it taps into and reveals diversity in the sample. The next best items are Accomplish and Maintain (items 1 and 4), which are useful in tapping into and revealing diversity among people reporting cognitive deficits (Accomplish), and demographic factors (both Accomplish and Maintain items).
The goal delineation items identified as best performers in this study will be used to develop a shorter open-ended version of the QOL Appraisal Profile, and an entirely close-ended version of the QOL Appraisal Profile for use in more standard survey research settings. These tools will enable coaching patients in medical decision making as well as investigations of appraisal and response shift in QOL research.
目标是患者生活质量(QOL)评估中认知评估过程的重要基础,因为它们是个人参照框架的基础。我们试图为两个新版本的QOL评估概况确定六个目标描述项目中的最佳项目及相关主题:一个使用最佳开放式目标描述项目子集的访谈工具,以及一个用于调查研究的较短的封闭式版本。
这是对北美多发性硬化症(MS)研究委员会登记处参与者的纵向数据(n = 1126)的二次分析。开放式数据由至少两名训练有素的编码员进行编码,评分者间信度中等偏高。有31个反映目标内容的主题,如健康、人际关系、独立性、心理健康和财务主题。描述性统计确定了最普遍的主题。可靠性分析(α系数、项目与总分的相关性)和分层线性模型确定了最佳目标项目。
基于这些定性和定量分析,“解决”(项目2)是最佳的单个项目,因为它是约三分之一目标主题的明确锚点,并解释了结果和人口统计学特征中最大的方差,这表明它能够挖掘并揭示样本中的多样性。次佳项目是“完成”和“维持”(项目1和4),它们有助于挖掘并揭示报告认知缺陷者(“完成”)以及人口统计学因素(“完成”和“维持”项目)之间的多样性。
本研究中确定为表现最佳的目标描述项目将用于开发一个较短的开放式QOL评估概况版本,以及一个完全封闭式的QOL评估概况版本,用于更标准的调查研究环境。这些工具将有助于指导患者进行医疗决策,以及开展QOL研究中的评估和反应转移调查。