Those living with Still's Disease have spoken.
PATIENT-REPORTED STILL'S DISEASE BROCHURES

As an organization led by people living with AiArthritis diseases, we have spent the last decade conversing with others, like us. As a result of those discussions, we realized the symptoms we experience may or may not reflect those medical professionals traditionally associate with our conditions. So we began researching medically credible websites, logging the symptoms lists for various AiArthritis diseases (one was Still's Disease), then cross-comparing the results. No two publications were alike. This is problematic for those looking for an all-inclusive list of symptoms.  Since then, our organization has been dedicated to collecting patient-reported disease experiences and using this information to develop robust, medically reviewed disease lists...the Patient-Reported Still's Disease brochures are the first to publish!


The Need

When the International Still's Disease Foundation (ISDF) dissolved in 2017, they requested that our organization continue standing in to help the Still's community - which included carrying on the tradition of Still's Disease Awareness Day and developing updated disease brochures.  So in 2019, we began speaking to those living with Still's and asking them what type of resources they needed.  While patients wanted an updated general disease brochure, they also expressed a need for something they could bring to new doctors and hospital staff to help explain Still's and their unique disease challenges. 

The solution
We recruited over 100 people living with a form of Still's Disease, including the parents of juvenile patients, to participate in a variety of online focus groups and surveys over the course of the past year. The first activity (online focus group) helped us gain a better understanding about the types of resources needed. Next, we invited participants to answer questions about their symptoms and disease experiences (options: survey or focus groups). After the data was collected, we submitted the data to our medical reviewers from the Center for Autoinflammatory Diseases, who helped finalized the materials. Finally, we invited patients/parents back one more time to review final drafts. You can view more about the process below.

Impact
These materials will help those all over the world who affected with Still's explain their disease to others, including friends, family, medical practitioners, and hospital staff.  The resource designed to take to medical professionals and hospitals will be designed for easy transport and include a blank space for customization, per each patients' unique needs.  As a result, we hope to increase public, peer, and healthcare practitioner education and, as a result, increase detection, diagnosis, and better disease outcomes. 

Based on this project and the methods learned, we will begin developing additional patient-reported disease materials for other conditions in our space.

Brochures - Available for FREE download and printing

These brochures will be available soon for bulk orders. In the meantime, we encourage you to download these materials for FREE - then print them from home whenever you need them!

Patient-Reported Still's Disease Brochure

In 2013, we started our research into patient-reported symptoms versus symptom lists published by medical professionals (Mayo Clinic, American College of Rheumatology, National Institutes of Health). After cross-comparing these lists, we realized there were no two alike. Furthermore, symptoms patients were reporting were not always mentioned.  As a result, we began conducting additional research into patient-reported disease experiences, with plans to take this information to medical advisors and, as a result, develop all-inclusive disease symptom lists. Thanks to financial support from Swedish Orphan Biovitrum AB (Sobi), we made this a reality - starting with Still's Disease!

Still's Disease Folding Information Card

Those living with Still's Disease told us they get frustrated when they see new doctors, as most are unfamiliar with Still's Disease. Matter-in-fact, many patients reported the physician looked up their disease online - in front of them - to learn more about it. Others have had doctors admit they have never met a person with this condition; thus, they relate it to caring for lupus or rheumatoid arthritis. Several adult patients have been told, "You can't have Still's, that's a child's disease." 


These frustrations increase when there is an emergency, and the patient must go to the hospital. "We need a resource that is small enough to carry in a wallet, hang on the refrigerator, and that we can also share with caregivers who may need to communicate on our behalf." This piece highlights top symptoms, common laboratory abnormalities, awareness points (i.e., an adult patient with childhood onset does not have Adult-Onset Still's Disease), and space for the patient to write any notes specific to their condition (#MyStills).

The Process: How we designed Patient-Reported Disease Brochures

Medical Review Team

Thank you to Apostolos Kontzias M.D. with the Center of Autoinflammatory Diseases at Stony Brook University, along with some members of his team, who have happily agreed to be our medical review advisors and research assistants for these educational materials. 




* Our initiative to develop patient-reported disease information brochures and associated materials was made possible through a grant provided by  Swedish Orphan Biovitrum AB (Sobi).


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