PatientsLikeMe, Inc, 160 Second St, Cambridge, MA, 02142, USA.
Patient. 2019 Feb;12(1):83-95. doi: 10.1007/s40271-018-0320-x.
There is an increasing focus on measuring performance indicators of health care providers, but there is a lack of patient input into what defines 'good care.'
The primary objective was to develop a conceptual model of 'good health care' from the patient's perspective. Exploratory analyses were also conducted to investigate (1) differences in patient priorities based on demographic and clinical factors, and (2) differences between patients and health stakeholders (e.g., clinicians, researchers) with respect to patient health care priorities.
These objectives were accomplished using group concept mapping. Following statement generation, PatientsLikeMe members, Baltimore community members recruited through a university-affiliated clinic, and stakeholders individually sorted the statements into meaningful categories and rated the statements with respect to importance. Qualitative and quantitative analyses generated a final conceptual model.
One hundred and fifty-seven patients and 17 stakeholders provided input during statement generation. The 1779-statement pool was reduced to 79 statements for the structuring (sorting and rating) activities. In total, 221 patients and 16 stakeholders completed structuring activities through group concept mapping software. Results yielded a 10-cluster solution, and patient priorities were found to be relatively invariant across demographic/clinical groups. Results were also similar between patients and stakeholders.
This comprehensive qualitative and quantitative investigation is an important first step in developing patient-reported outcome performance measures that capture the aspects of health care that are most important and relevant for patients. Limitations and future directions are discussed.
人们越来越关注医疗服务提供者的绩效指标，但缺乏患者对“优质护理”的定义的意见。
从患者的角度出发，我们旨在制定一个“优质医疗保健”的概念模型。同时还进行了探索性分析，以调查（1）基于人口统计学和临床因素的患者优先事项的差异，以及（2）患者与医疗保健利益相关者（如临床医生、研究人员）之间在患者医疗保健优先事项方面的差异。
采用团体概念映射法来实现这些目标。在生成陈述后，PatientsLikeMe 成员、通过大学附属医院招募的巴尔的摩社区成员以及利益相关者分别将陈述按有意义的类别进行分类，并就重要性对陈述进行评分。定性和定量分析生成了最终的概念模型。
共有 157 名患者和 17 名利益相关者在生成陈述时提供了意见。1779 条陈述经过筛选后，用于结构（分类和评分）活动的陈述数量减少至 79 条。共有 221 名患者和 16 名利益相关者通过团体概念映射软件完成了结构活动。结果得出了 10 个聚类解决方案，且患者的优先事项在人口统计学/临床分组中相对不变。患者和利益相关者的结果也相似。
这项全面的定性和定量研究是开发患者报告的结果性能衡量标准的重要的第一步，该衡量标准可捕获对患者最重要和最相关的医疗保健方面。本文讨论了研究的局限性和未来的方向。
