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慢性阻塞性肺疾病患者对电子患者报告结局的使用和设计偏好。

Preferences for Use and Design of Electronic Patient-Reported Outcomes in Patients with Chronic Obstructive Pulmonary Disease.

机构信息

ERT, 500 Rutherford Ave, Boston, MA, 02129, USA.

Endpoint Outcomes, Boston, MA, USA.

出版信息

Patient. 2019 Dec;12(6):621-629. doi: 10.1007/s40271-019-00376-9.

Abstract

OBJECTIVES

Collection of patient-reported outcome (PRO) measures is critical to fully understand chronic obstructive pulmonary disease (COPD) management and progression, as the impact on health-related quality of life is not well understood by objective measures alone. Electronic PROs (ePROs) are increasingly used because of their advantages over paper data collection, including elimination of transcription errors, increased accuracy and data quality, real-time data reporting, and increased compliance. The objective of this study was to characterize how patients with COPD prefer to use various types of technology to report disease symptoms, and their preferences for ePRO design and display.

METHODS

The sample consisted of subjects with COPD (N = 103) who completed in-person surveys on their ePRO preferences.

RESULTS

The majority of subjects prefer to use a form of electronic media over paper to report their disease symptoms. Of these electronic methods, subjects most often prefer to use a smartphone provided by their physician. Subjects were also interested in ePRO features, such as knowing estimated PRO completion time at the outset, tracking their progress in real time as they complete a questionnaire, seeing the data that they report in order to track their health status, being encouraged to complete their diary if they fall behind by positive messaging, and being thanked for their completion of a daily diary.

CONCLUSIONS

Investigators should consider including these preferences when designing ePRO assessments. Incorporating patient preferences for ePRO design can ultimately help reduce patient burden and increase engagement, compliance, and improve data quality.

摘要

目的

收集患者报告的结果(PRO)测量结果对于全面了解慢性阻塞性肺疾病(COPD)的管理和进展至关重要,因为仅凭客观测量无法充分了解对健康相关生活质量的影响。电子患者报告结局(ePRO)因其相对于纸质数据收集的优势而越来越多地被使用,包括消除转录错误、提高准确性和数据质量、实时数据报告以及提高依从性。本研究的目的是描述 COPD 患者如何偏好使用各种类型的技术来报告疾病症状,以及他们对 ePRO 设计和显示的偏好。

方法

该样本包括 103 名 COPD 患者,他们完成了关于 ePRO 偏好的面对面调查。

结果

大多数患者更喜欢使用电子媒体而不是纸质媒体来报告他们的疾病症状。在这些电子方法中,患者最常希望使用医生提供的智能手机。患者还对 ePRO 功能感兴趣,例如在开始时就知道预计 PRO 完成时间、实时跟踪他们在完成问卷时的进展、查看他们报告的数据以跟踪他们的健康状况、如果他们落后于积极的信息被鼓励完成日记,以及在完成每日日记时得到感谢。

结论

研究人员在设计 ePRO 评估时应考虑纳入这些偏好。纳入患者对 ePRO 设计的偏好最终有助于减轻患者负担,提高参与度、依从性,并提高数据质量。

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