Patient-Reported Still’s Disease Brochures - Consent to Participate

This project was developed by the International Foundation for Autoimmune & Autoinflammatory Arthritis (IFAA), based on a community-reported need for Still’s disease brochures and associated materials to educate the public and medical practitioners about this condition - and the unique presentation and progression associated with this autoinflammatory disease. Results from our focus groups and/or survey will be reviewed by Dr. Apostolos Kontzias M.D. with the Center of Autoinflammatory Diseases at Stony Brook University, along with some members of his team. Funding for this project was supported by the Swedish Orphan Biovitrum AB (Sobi).

Purpose. While there are general Adult Onset Still’s Disease (AOSD) and systemic Juvenile Idiopathic Arthritis (sJIA) informational brochures available by various nonprofits, they are almost entirely based on medical literature and are not as inclusive of the voice of the patient or their experience living with these unique diseases. For example, most existing data includes “textbook” features only, which may at times lend to delays in detection in a population that is filled with “atypical” patients. Lack of overall understanding about Stills, including misinformation that its “a childhood disease”, further adds to educational problems.

At IFAA, we firmly believe that no one is better qualified to explain a disease better than those living with it every day. That is why our foundation is based on hosting peer-led conversations, which help identify missing gaps that often lead to innovative (and patient-infused) solutions. Once we identified the problem, and associated need to develop disease education and awareness brochures for the Still’s community, we organized an online discussion in the Facebook group to assess exactly what type of materials they were envisioning.

Methods. To prepare for this project, IFAA invited members to participate in a private, online Facebook discussion, which took place “live”, but which also remained active for 48 hours – so those in different time zones and with disease limitations could participate as able. The questions were designed to explore what type of materials patients and their families felt were needed and who the intended audience(s) would be. Over two-dozen members participated, from various countries and representing both patients with AOSD and sJIA (range since onset from < 1 year to > 20 years) and family members. Based on these discussions, the following scope for Still’s educational brochures and associated materials was determined:

• Materials should not only based on clinical, “textbook” symptoms, but also include patient-reported realties; with options for patients to explain their personal uniqueness to medical professionals at visits.
• Materials should not always group AOSD and sJIA together, even though they are technically the same disease. Patients strongly feel there are enough differences to warrant at least some separation, particularly in hospital situations when staff view adult and pediatric crisis situations differently.
• Resources need to be easily carried in case of emergency to hospitals, which explain Stills to staff in a quick manner – without having to compare it to Rheumatoid Arthritis or Lupus.

To develop the content for our materials, IFAA recruited patients with both AOSD and sJIA, with an extended invitation to their caregivers (if applicable), through social media, e-newsletters, and with the help of other nonprofit partners who shared with their communities through early October 2019. Thank you to those who agreed to participate!

Compensation. There is no compensation for those participating in either the focus groups or surveys. 

Risks/Discomforts. There are minimal risks for participation. However, you may feel emotional discomfort when answering questions about your experiences with Still’s disease. If you feel the focus group option to participate is not preferred, and you would rather participate via a survey, please contact Stephanie@AiArthritis.org and she will provide you with a link to the survey. You DO NOT need to take the survey if you complete the focus group, as the questions are the same.

Benefits. While there are no direct benefits to subjects, it is hoped that your participation will help:

• Develop educational materials to further the understanding of Still’s disease for friends, family, and the general public;
• The future of rheumatology by identifying a more complete detection and overall understanding of Still’s disease - and it’s uniqueness per individual - thus promoting earlier detection and diagnosis, as well as better outcomes and care.

Confidentiality. All information provided will remain confidential and will only be reported as group data with no identifying information. All data will be kept in a secure location and only those directly involved with the research will have access to it. Those participating in online focus groups will be randomly assigned aliases, generated by the software program.

Participation in this project is voluntary. You have the right to withdraw at any time or refuse to participate entirely. If you have any questions about this project, you can email IFAA’s Community Research Manager, Stephanie Berg, at Stephanie@AiArthritis.org. 

Please acknowledge that you have read and understood the above consent and are participating of your own free will in this project by returning to the survey and choosing "yes". If you choose "no", you will be directed out of the survey.