OPEX: Development of a novel overall patient experience measure to facilitate interpretation of comparison effectiveness studies

By The ArthritisPower TeamNovember 2, 2021December 9th, 2021Research Registry

The objective of this study was to develop a patient reported measure to capture the overall experience, including benefits and harms, of treatment using Rheumatoid Arthritis (RA) as an example. The authors utilized Trajectory Mapping to organize adverse events and improvements from treatments to create a hierarchy of patient experiences. The results of this study help to contextualize what types of adverse events patients are willing to tolerate for levels of improvement when trying treatments.

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PatientSpot registry infrastructure was funded through a Patient-Centered Outcomes Research Institute Award (PCORI Contract Number PPRN-1306-04811). PatientSpot (formerly known as Arthritis Power) was jointly developed by the nonprofit Global Healthy Living Foundation (GHLF), its associated CreakyJoints arthritis patient community, and rheumatology researchers at the University of Alabama at Birmingham (UAB). We reserve the right to change and add sponsors and partner organizations and we also reserve the right to change placement of text on the page. Created by CreakyJoints® patient community in collaboration with patient advocates at Global Healthy Living Foundation (GHLF) and researchers at the University of Alabama at Birmingham (UAB), Arthritis Power (now PatientSpot)’s past participation in PCORnet®, the National Patient-Centered Clinical Research Network, was supported through multiyear, multimillion-dollar Patient-Centered Outcomes Research Institute funding awards [PPRN-1306-04811]. Global Healthy Living Foundation (GHLF), the parent organization of PatientSpot, receives grants, sponsorships and contracts from pharmaceutical manufacturers and private foundations. A full list of GHLF funders is publicly available here: https://www.ghlf.org/our-partners.