JIA Voice of the Patient

The world’s largest network of arthritis patients – the Arthritis Foundation, and the largest network of pediatric rheumatologists – the Childhood Arthritis and Rheumatology Research Alliance (CARRA) hosted the externally-led Juvenile Idiopathic Arthritis (JIA) Patient-Focused Drug Development (PFDD) meeting in Washington, D.C. on August 2, 2018. Families from around the country, FDA staff, industry leaders, and researchers attended in person and virtually via webinar. 

This meeting provided the U.S. Food and Drug Administration (FDA), drug developers, health care providers, academic researchers, and other stakeholders an opportunity to hear directly from patients, patient advocates and caretakers about the signs and symptoms that matter most to them. JIA parents and their families shared information about the impact of JIA on daily life, the most challenging symptoms, experiences with currently available treatments and the need for new and different treatments.  

Before the meeting, the Arthritis Foundation reached out to patients and their families from all over the country to obtain background information. A total of five focus groups and close to 600 families responded to survey questions to provide more about patient experiences and concerns. Some of the vital information about the burden of disease and treatment options gathered include: 

Most common symptoms that cause the most significant burden were pain and fatigue, followed by swelling, stiffness, limited range of motion, and among systemic JIA families, fevers and rashes. 

Over 3 in 4 patients report pain as the JIA symptom with the biggest impact on their daily life. 

Over a third of patients say pain and fatigue are not satisfactorily addressed with current treatments. 

Parents frequently raised mental and emotional health issues; young adults were more focused on specific joint symptoms and related functional losses. 

All groups spoke on the impact on ability to participate in sports. Parents raised concerns about reduced capability to participate in school and social activities; young adults were more focused on impacts on work, driving, and use of assistive technology. 

Over 3 in 4 patients have used non-prescribed treatments to help reduce symptoms of JIA .

An “ideal” drug is one with oral administration, and little to no side effects—how the drug affects reproductive health is a concern. Reduced frequency of treatment was also desired. 

The JIA Voice of the Patient Report is an overview of results from this meeting, the background information collected prior to the meeting and stories shared by the patients and parents who participated in the meeting.

To learn more, watch the August 2, 2018 meeting: