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Quality of Life Research
Gepubliceerd in: Quality of Life Research 8/2016

01-08-2016

Using patient-reported outcomes and PROMIS in research and clinical applications: experiences from the PCORI pilot projects

Auteurs: Clifton O. Bingham III, Susan J. Bartlett, Peter A. Merkel, Thelma J. Mielenz, Paul A. Pilkonis, Lauren Edmundson, Emily Moore, Rajeev K. Sabharwal

Gepubliceerd in: Quality of Life Research | Uitgave 8/2016

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Abstract

Purpose

The field of patient-centered outcomes research (PCOR) continues to develop. Patient-reported outcomes and, in particular the Patient-Reported Outcomes Measurement Information System (PROMIS) contribute complementary data to clinician-derived outcomes traditionally used in health decision-making. However, there has been little work to understand how PROMIS measures may inform or be integrated into PCOR or clinical applications.

Methods

Lead investigators from four pilot projects funded by the Patient-Centered Outcomes Research Institute (PCORI) collaborated to discuss lessons learned about the use of PROMIS in PCOR studies via virtual and in-person meetings. In addition, a qualitative data collection tool was used to assess the pilot projects’ experiences.

Results

Lessons learned from the pilot projects centered on practical elements of research design, such as choosing the right outcomes to study, considering the advantages and limitations of the PROMIS short forms and computer adaptive technology versions, planning ahead for a feasible data collection process, maintaining the focus on patients by ensuring that the research is truly patient-centered, and helping patients and providers make the most of PROMIS in care.

Conclusion

The PCORI pilot projects demonstrated that PROMIS can be successfully used to conduct research that will help patients make decisions about their care. Interest in PCOR continues to grow and the lessons learned from these projects about the use of PROMIS will be helpful to investigators. Given the numerous benefits of PROMIS, implementing this tool in research and care will hopefully lead to significant progress in measuring health outcomes that are meaningful and relevant to all stakeholders.
vorige artikel How different are composite and traditional TTO valuations of severe EQ-5D-5L states?
volgende artikel The effect of response option order on self-rated health: a replication study
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Metagegevens
Titel
Using patient-reported outcomes and PROMIS in research and clinical applications: experiences from the PCORI pilot projects
Auteurs
Clifton O. Bingham III
Susan J. Bartlett
Peter A. Merkel
Thelma J. Mielenz
Paul A. Pilkonis
Lauren Edmundson
Emily Moore
Rajeev K. Sabharwal
Publicatiedatum
01-08-2016
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 8/2016
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-016-1246-1

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