What’s Important to Juvenile Idiopathic Arthritis (JIA) Families: the JIA Voice of the Patient Report

Arthritis patients have spoken: “We want safer, more effective, easier-to-use and less-painful-to-administer treatments that are less likely to cause potential long-term side effects. We need solutions to the challenges of dealing with comorbidities and multiple treatment changes.”

The Arthritis Foundation and leadership at the Childhood Arthritis and Rheumatology Research Alliance (CARRA) are pleased to announce the release of the Voice of the Patient Report.This report was created to summarize results from the externally-led Patient-Focused Drug Development (PFDD) meeting about Juvenile Idiopathic Arthritis (JIA), hosted August 2, 2018.  This meeting gave the U.S. Food and Drug Administration (FDA), drug developers, health care providers, academic researchers and other stakeholders the opportunity to hear directly from patients, advocates and caretakers about the signs and symptoms that matter most to them.

In the months prior to the 2018 JIA PFDD meeting, we sent an online survey to JIA families throughout the country and conducted five focus groups in Seattle, WA, to provide background info for discussion. During the meeting, patients and their families as panelists described their experiences with JIA. Each family living with the disease has their own, unique experiences, and each patient has a personal memory of what they’ve encountered. While every family affected by this disease lives with different problems, panelists and other participants in the PFDD meeting tended to deal with their most challenging issues.

A key goal of testimonies was getting clear calls to action. This is a key shift in how patients are typically recruited for research and therapy development. We’re moving from a largely emotional description of the lived experience to a discussion that informs the conversation and compels action. The JIA PFDD Voice of the Patient Report is a summary of the findings from the survey, focus groups and our meeting.

Read the full report here, and learn more about how you can get involved in volunteer and patient-led activities with the Arthritis Foundation.


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