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Journey Communication Improvement Aids for Juvenile Idiopathic Arthritis (JIA)/Subgroups - Diagnosis & Treatment

A patient-inspired project to develop communication aids to improve decision making between JIA families and health workers throughout their diagnosis and treatment journey.

In collaboration with:

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Photo by: John Doe

The problem:

Identify Unmet Needs

Create Additional Tools

Better Communication

Improved Outcomes

Our Patient-Infused Solution

Background


Every project we take on at AiArthritis is the result of communicating with our community (our peers, as we are led by people affected by these diseases) and finding missing gaps in current education, advocacy/policy, or research that, if improved, would impact lives. In this case, while attending the annual American College of Rheumatology (ACR) and European Alliance of Associations for Rheumatology (EULAR) through our "Go With Us!" to Conferences program, we first noticed an increase in research around enthesitis - the inflammation of tendons and ligaments that attach to the bone.  As many of us are 'spondy's' (persons living with one of the spondyloarthritis diseases) we began questioning how, if at all, this important disease feature is discussed in our rheumatology office visits. This, in conjunction with our efforts to improve patient-doctor communication, led to preliminary research with JIA families, focusing strongly on those affected by Enthesitis-Related Arthritis (ERA)/Juvenile Spondyloarthritis and Juvenile Psoriatic Arthritis (jPsA).  As a result of this work, we identified several areas in the patient/family journey that, if addressed, could improve outcomes. And that's how this project came to be! Read more about the background and preliminary research.



About the Project


  • After identifying existing communication tools available to improve patient/family, physician, and specialist (1) communications in JIA and subgroups of JIA (2), we will begin developing a variety of 'bite sized' communication aids that are easy for patients/families to access from our website. We will do this by:
  • Leading surveys and focus groups with families affected by JIA/ERA-jSpA/jPsA, rheumatologists, nurses, physical therapists, orthopedic doctors (any specialty involved in the patient/family journey through diagnosis and therapy) to further understand how subgroups of JIA (mainly ERA - jSpA, jPsA) may require additional communication guidance to address specific challenges impacting diagnosis and therapeutic management.
  • Hosting continued conversations and design learning materials through our award-winning AiArthritis Voices 360 Talk Show and private online patient/peer-led community.
  • Design additional communication tools and guidance that focus on patient/family conversations with all specialists/health professionals seen during their diagnostic and therapeutic journey (i.e., short videos, recommended questions and mentorship to empower patients/families to have stronger voices). English and Spanish.


(1) Specialists identified in the journey include primary care physicans/general practitioners, physical therapists, orthopedic doctors, nurses

(2) Diagnoses Subtypes of JIA: Oligoarthritis, Polyarthritis, Systemic/Still's Disease, Psoriatic Arthritis, Enthesitis-Related Arthritis (may develop into juvenile Spondyloarthritis), Undifferentiated


Intended Impact

By identifying communication gaps that exist along the diagnostic and therapeutic journey (focus on all health experts in that journey), we will be able to design new tools to bridge discussions between patients/families and their extended health team. In turn, we can improve diagnosis, therapy management, and healthcare outcomes.


Our work will include understanding communication issues associated with JIA as an umbrella condition and how needs vary among subgroups - with a focus on those subgroups that include enthesitis (ERA/jSpA, jPsA).



Enthesitis is not the same as joint pain. It is prominent in juvenile arthritis subgroups of jPsA, ERA (which may develop into juvenile Spondyloarthritis/jSpA).

Your voice matters!

Pull up a seat "at the table."

AiArthritis Voices 360 is an award-winning arthritis-based podcast created by our team to discuss relevant topics and concerns relating to the autoimmune and autoinflammatory diseases affecting our community. Each month we invite specialists, medical professionals, and members of our AiArthritis community to discuss a variety of topics and concerns - including Juvenile Idiopathic Arthritis! Check out the link below for more information on our talkshow episode dedicated to Juvenile Idiopathic Arthritis, including links to resources and an educational takeaway.

  • Ep 83: Improving Communication Throughout the JIA Journey

    Have you or your family been affected by juvenile arthritis? On this episode, Tiffany is joined by Rochelle Lentini, CEO and President of Purple Playas Foundation, who have united with other specialists and families to identify additional tips to improve communication.


    During this program, Rochelle and Tiffany discuss a new collaborative Juvenile Idiopathic Arthritis (JIA) project between AiArthritis and Purple Playas Foundation, along with Rheumatology Nurses Society and Novartis, to create discussion aids and question guidance to help families improve communication with all the professionals they meet along the way. 

Thank you to Novartis for supporting this initiative.

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