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

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-m...

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Publicado en:Quality of Life Research Vol. 25; no. 8; pp. 2109 - 2117
Autores principales: Bingham, Clifton, Bartlett, Susan, Merkel, Peter, Mielenz, Thelma, Pilkonis, Paul, Edmundson, Lauren, Moore, Emily, Sabharwal, Rajeev, Bingham, Clifton O 3rd, Bartlett, Susan J, Merkel, Peter A, Mielenz, Thelma J, Pilkonis, Paul A, Sabharwal, Rajeev K
Formato: research Journal Article
Publicado: Springer Nature Aug2016
Acceso en línea:Ver este registro en EBSCOhost
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        atl: Using patient-reported outcomes and PROMIS in research and clinical applications: experiences from the PCORI pilot projects.
      aug:
        au:
          Bingham, Clifton
          Bartlett, Susan
          Merkel, Peter
          Mielenz, Thelma
          Pilkonis, Paul
          Edmundson, Lauren
          Moore, Emily
          Sabharwal, Rajeev
          Bingham, Clifton O 3rd
          Bartlett, Susan J
          Merkel, Peter A
          Mielenz, Thelma J
          Pilkonis, Paul A
          Sabharwal, Rajeev K
        affil: Division of Rheumatology, Johns Hopkins University, 5200 Eastern Avenue, MFL Center Tower Room 404 Baltimore 21224 USA
      sug:
        subj:
          Outcome Assessment
          Research, Medical
          Quality of Life
          Pilot Studies
          Scales
          Human
          Funding Source
      ab: 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.
      pubtype: Academic Journal
      doctype:
        research
        Journal Article
      ougenre: Article
    language: English
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