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Cure JM Foundation 2016 Annual Conference Recap

What Matters to JM Families - Discussion facilitated by CARRA Researchers

Patient Outcomes Measures: Dr. Heather Tory

Assistant Professor of Pediatrics, University of Connecticut School of Medicine, Department of Rheumatology and Associate Medical Director of Quality and Safety at Connecticut Children’s Medical Center

Dr. Heather Tory collaborates with families about the health outcomes that are important to patients with JDM and their families.

Dr. Heather Tory collaborates with families about the health outcomes that are important to patients with JDM and their families.

To begin to understand the health outcomes that are important to patients with JDM and their families, a survey was developed by the members of the CARRA JDM Quality Measures Subcommittee through a consensus process.

The survey was administered to patients and their families with JDM through Cure JM in May, 2014. The survey asked patients and their families to rate the importance of different quality measures and patient reported outcomes to determine which measures they found most relevant and meaningful. A second identical survey was then sent to pediatric rheumatology care providers through CARRA to compare responses.

The next step for this project was to collaborate with families at the Cure JM Foundation Family Conference and use this information as a foundation for further development of a standardized set of patient centered quality measures for JDM.

During this break-out session, background information was presented relating to the purpose  of establishing quality measures, use of quality measures and patient reported outcomes in clinical practice and administration, and the current state of quality measures in JDM.

A draft of patient-centered quality and outcome metrics will be proposed (at a later time) based on the results of this breakout session.

Thank you to all of the families that participated in this important session.