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Implementing patient-reported outcome measures in clinical practice: a companion guide to the ISOQOL user’s guide

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Abstract

Purpose

The use of patient-reported outcome (PRO) measures in clinical practice is increasing. Following the creation of a ‘User’s Guide to Implementing PRO Assessment in Clinical Practice’ by the International Society for Quality of Life Research (ISOQOL), volunteers from ISOQOL sought to create a Companion Guide to assist health care providers with the scientific and practical considerations involved in implementing and using PRO measures in clinical care by using information from real-world case studies. This paper summarizes the key issues presented in the Companion Guide.

Methods

Ten respondents, who were members of the ISOQOL’s CP-SIG and worked in various clinical areas, participated in a survey or telephone interview. Participants were from Canada (n = 2), Denmark (n = 1), England (n = 2), Holland (n = 1), and the United States (n = 4).

Results

Based on the information provided by respondents, a Companion Guide was produced, organized according to the nine questions presented in the User’s Guide. An additional section for key take-home messages was also provided. This guide provides examples of issues and considerations related to the implementation of PRO measures in clinical practice.

Conclusions

Respondents provided insight into their experiences and emphasized that PRO initiatives were likely to be more successful if there is purposeful, designed integration into clinical practice, meaningful substantive engagement with all stakeholders and access to necessary organizational resources. The ability to leverage existing technology as well as realistic and stakeholder consensus-driven expectations for planning and timing were also key to the successful implementation of PRO measures.

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Acknowledgements

This paper is produced on behalf of the International Society for Quality of Life Research (ISOQOL). All authors are members of ISOQOL. The manuscript was reviewed and approved by the ISOQOL Board of Directors as an ISOQOL publication and does not reflect an endorsement of the ISOQOL membership. We would like to acknowledge the time and effort of our case study contributors in supporting the creation of this Companion Guide.

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Correspondence to Louise Newton.

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The authors declare that they have no conflict of interest.

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All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed consent

It was obtained from all individual participants included in the study.

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Chan, E.K.H., Edwards, T.C., Haywood, K. et al. Implementing patient-reported outcome measures in clinical practice: a companion guide to the ISOQOL user’s guide. Qual Life Res 28, 621–627 (2019). https://doi.org/10.1007/s11136-018-2048-4

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  • DOI: https://doi.org/10.1007/s11136-018-2048-4

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