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

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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.

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Data Availability Statement

The datasets generated during and/or analyzed during the current study are not publicly available because all data are proprietary to eResearch Technology (ERT), but are available from the corresponding author on reasonable request.

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Acknowledgements

This work was supported by eResearch Technology (ERT). The authors would like to acknowledge the subjects who participated in the study.

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Authors and Affiliations

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

    Kelly M. Dumais, Nadeeka Dias, Laura Khurana, Sarah Tressel Gary & Susan M. Dallabrida

  2. Endpoint Outcomes, Boston, MA, USA

    Brooke Witherspoon & Christopher J. Evans

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  1. Kelly M. Dumais
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Contributions

Author KMD analyzed the data and wrote the manuscript. Authors ND, LK, and ST contributed to data analysis. Authors BW and CJE performed participant interviews and edited the manuscript. Author SMD contributed to study design and edited the manuscript.

Corresponding author

Correspondence to Kelly M. Dumais.

Ethics declarations

Ethical Approval

All procedures performed involving human participants were in accordance with the ethical standards of the national research committee (Copernicus Group IRB) and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Informed consent was obtained from all individual participants included in the study.

Funding

This study was funded by eResearch Technology (ERT).

Conflict of Interest

Authors KMD, ND, LK, STG, and SMD are employees of eResearch Technology (ERT), which funded this research, and authors CE and BW are employees of Endpoint Outcomes, which performs services for ERT.

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Dumais, K.M., Dias, N., Khurana, L. et al. Preferences for Use and Design of Electronic Patient-Reported Outcomes in Patients with Chronic Obstructive Pulmonary Disease. Patient 12, 621–629 (2019). https://doi.org/10.1007/s40271-019-00376-9

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