Medicine, Humanities and Public Health Sciences, Pennsylvania State University College of Medicine, Hershey, Pennsylvania, USA.
Kingston General Health Research Institute and Clinical Evaluation Unit, Kingston, Ontario, Canada.
J Pain Symptom Manage. 2019 May;57(5):980-988.e9. doi: 10.1016/j.jpainsymman.2019.01.008. Epub 2019 Jan 24.
Although measures that assess patient engagement in the advance care planning (ACP) process exist, there are no validated tools to assess surrogate decision makers' (SDMs') role in ACP.
The objective of this study was to adapt and begin to validate a patient-oriented questionnaire for use with SDMs of patients with chronic illness.
Questions from the 55-item patient-oriented ACP engagement survey were adapted for SDMs and assessed for face validity. The resultant 47-item questionnaire was administered to 65 SDMs of patients with chronic illness. Responses were assessed and items were flagged for removal based on item redundancy, nonresponses, and ceiling effects. A preliminary exploratory factor analysis was performed, internal consistency was assessed, and domains were constructed based on findings.
The 47-item questionnaire was administered to 65 participants (mean age 51.8; 81% female; 96% Caucasian). Seventeen items were removed owing to redundancy (r > 0.80), and 13 items lacking face validity were removed. In a preliminary exploratory factor analysis of the resultant 17-item questionnaire, a three-factor solution was deemed most statistically and conceptually sound. Items were organized into domains: 1) serving as an SDM (seven items); 2) contemplation (four items); 3) readiness (six items). Internal consistency for each domain was high (Cronbach alpha 0.90-0.91).
The 17-item ACP engagement survey for SDMs (ACP-17-SDM) is a conceptually sound and reliable questionnaire adaptation of the original ACP engagement survey. This questionnaire may be used by researchers in parallel with the patient-oriented ACP engagement survey to more fully understand the impact of ACP interventions on SDMs. Larger studies are needed to more closely examine construct validity.
尽管有评估患者参与预先医疗指示(ACP)规划过程的措施,但没有经过验证的工具来评估代理人在 ACP 中的作用。
本研究旨在改编并初步验证一种针对慢性病患者代理人的以患者为导向的 ACP 参与调查问卷。
从 55 项患者导向的 ACP 参与调查中改编了适用于代理人的问题,并评估了其表面效度。由此产生的 47 项问卷被用于 65 名慢性病患者的代理人。根据项目冗余、无反应和上限效应,对回答进行评估,并标记项目以删除。进行了初步的探索性因素分析,评估了内部一致性,并根据研究结果构建了域。
47 项问卷被用于 65 名参与者(平均年龄 51.8 岁;81%为女性;96%为白种人)。由于冗余(r>0.80),删除了 17 项,并且由于缺乏表面效度,删除了 13 项。在对剩余的 17 项问卷进行初步探索性因素分析时,认为三因素解决方案在统计学和概念上最合理。项目被组织成三个域:1)作为代理人(7 项);2)思考(4 项);3)准备(6 项)。每个域的内部一致性都很高(Cronbach alpha 0.90-0.91)。
代理人的 ACP 参与调查问卷(ACP-17-SDM)是对原始 ACP 参与调查问卷的概念上合理且可靠的改编。研究人员可以使用该问卷与以患者为导向的 ACP 参与调查问卷并行使用,以更全面地了解 ACP 干预对代理人的影响。需要更大的研究来更密切地检查构念效度。