2017 Still's/Systemic JIA (SJIA) Symptoms vs Lab Findings Survey

Please respond to this survey by May 18th, 2017. The goal of this survey is to get patient perspectives about the periods in between flares for patients with Still's/ Systemic Juvenile Idiopathic Arthritis (SJIA).

We are interested in understanding what unmet needs that SJIA patients might have in between flares when their labs are normal for inflammation, such as: C-reactive protein (CRP), Erythrocyte Sedimentation Rate (ESR), ferritin, but they continue to have symptoms.

Note that we have a separate, similar version of this survey for patients with other autoinflammatory diseases to complete at this link.

All responses will be kept anonymous and aggregated results will be published and presented at an international medical meeting on May 24th in Zurich, Switzerland.

Your input will be valuable for some research projects and awareness opportunities to help patients with autoinflammatory diseases. This is a completely anonymous survey, and no identifying info or contact info will be collected. 

This survey is an initiative of the Autoinflammatory Alliance, the SJIA Foundation, Autoinflammatoire Netherlands and KAISZ. If you have any questions, please contact:

karen@autoinflammatory.org (Autoinflammatory Alliance)
rashmis@gmail.com (SJIA Foundation)
saskyaa@hotmail.com (Autoinflammatoire Netherlands and KAISZ.)

Thanks so much for your participation!

* 1. Are you answering on your own, or on behalf of your child?
(Note that if there are multiple people in your family with Still's/SJIA, each person should have their own survey.)

* 4. Have you been diagnosed with Still's/SJIA by a rheumatologist?

* 9. About your disease (Section 2)

What medication(s) are you currently using to treat Still's/SJIA? (Please list in the box below.)

* 10. What are your main symptoms of Still's/SJIA that affect you? Choose all that apply.

* 11. Have you ever had Macrophage Activation Syndrome (MAS)?

* 12. Do any of the following trigger flares/attacks of your Still's/SJIA?

* 13. Characteristics of symptoms during flares/attacks of Still's/SJIA, versus periods between flares

How many times have you had flares/attacks of your disease symptoms in the past year?

* 15. How would you rate the quality of life in-between flares/attacks of symptoms? (Your baseline norm between flares, or when you are not having symptoms.)

Very Poor
i We adjusted the number you entered based on the slider’s scale.

* 16. How would you rate your quality of life during a flare/attack of Still's/SJIA?

Very Poor
i We adjusted the number you entered based on the slider’s scale.

* 17. Have your lab tests ever shown that you had inflammation but you were asymptomatic (did not have symptoms of a flare)? Please comment in the box with details on what labs were showing inflammation (such as elevated CRP, ESR, ferritin, etc.)

* 18. Have you ever felt symptomatic (like you were in a flare/attack) or had symptoms of Still's/SJIA increased, but your inflammatory lab tests (CRP, ESR, etc.) were within the "normal" range?

* 19. What symptoms do you typically have when you feel symptoms of your disease like you are in a flare/attack, but your lab tests are within the "normal" range? Choose all that apply, and comment to add more details.

* 20. Impact of disease on daily life (Section 4)

To what extent do you feel limited in your everyday activities during a flare due to Still's/SJIA?

* 21. To what extent do you feel limited in your everyday activities in-between flares due to Still's/SJIA?

* 22. Has Still's/SJIA affected your work, career or schooling?

* 23. Any comments or feedback that you would like to share about your experiences with Still's/SJIA flares, and the periods in-between flares of your disease, or the impact of your disease on your life, or your family?

* 24. Family Background

Do you have anyone in your family that has the same disease and symptoms, or anyone in the family that suffers from a different inflammatory/rheumatolgic condition?

* 25. If you answered yes to Question 24, please list the relationship of the family member(s) and the disease/symptoms of any family members with the same disease/symptoms as you, and/or any immediate family members with other inflammatory diseases (autoimmune or autoinflammatory,)

Answer Example: I have SJIA, and my father had JIA when he was a child.