Journey Communication Improvement Aids for Juvenile Idiopathic Arthritis (JIA)/Subgroups - Diagnosis & Treatment
Improving Family, Juvenile, & Health Professional Office Visits
Let's do our best to improve the journey. As an organization led by persons affected by Autoimmune Arthritis and Autoinflammatory Arthritis (AiArthritis) diseases, we know the journey to diagnosis and then after diagnosis is a road that requires a lot of conversations with many different types of healthcare providers (or "stops" along the way). That's why we've spent the last couple of years working with JIA families and other health professionals (pediatricians, rheumatologists/fellows/nurses, physical therapists, occupational therapists, and ophthalmologists) to develop a series of conversation aids families and kids can download, think about, and complete ahead of office visits*.
There is one primary aid, called the Appointment Plan Communication Aid, which can be used in any phase of the JIA journey (diagnosis through long time disease), and in visits with any health provider along the way. We are also finalizing optional coordinating aids so families can customize the conversations depending on their needs (i.e., discussing therapies, reviewing test results, talking about symptoms and more). Each aid also includes JIA parent written guidance and examples to assist those who may struggle with what to say. This aid will help clarify goals and expectations for you/your child and the healthcare provider. It will also help all of you identify the best ways to communicate with one another.
As persons affected by these diseases, we know how hard it is to remember everything we want to talk about during an office visit or even how to prioritize what to say in the limited time we have. So, this aid was designed to help you/your child organize your thoughts and narrow down what you feel is most important to discuss with your healthcare provider prior to the visit.
It also includes additional JIA parent-written guidance and conversation starter examples to help you, if needed.
The Toolkit, including design, guidance, and examples, was co-created with Purple Playas Foundation.
Communication Toolbox: Communication Aids & Discussion Guides
Communication Aids
Click to download, print, or save to a device. This aid can be used for any phase of your journey, whether looking for a diagnosis or if you've lived with this for many years. It can also be used with any health professional you/your family may visit (i.e., pediatrician, rheumatologist, physical therapist, ophthalmologist, nurse, etc.)
Appointment Plan Communication Aid
This aid will help clarify goals and expectations for you/your child and the healthcare provider. It will also help all of you identify the best ways to communicate with one another.
This aid was designed to help you/your child organize your thoughts and narrow down what you feel is most important to discuss with your healthcare provider prior to the visit.
Symptoms Summary Communication Aid
Intended to help report back a SUMMARY of symptoms and disease activity over a period of time or since the last visit . To help summarize so much information for a short in office conversation, we also created the Symptoms Tracking Log, which can help summarize information for this form.
Treatment Discussion Communication Aid
Use this aid to help make decisions about potential treatments. This may be medicines or therapy and, like all the other aids, can be used with any type of healthcare team member.
Fill out what you can prior to the visit, then bring this with you to learn more from your visit about your options. Remember, one option is also no treatment.
Co-Existing Conditions & Additional Symptoms Communication Aid
While there are several symptoms that often occur in autoimmune & autoinflammatory arthritis diseases regardless of diagnosis, there can also be other symptoms (tummy aches, eye pain, etc) or separate conditions that may happen that also may require attention.
Use this aid to record any symptoms outside of the core 6 on the Symptoms Tracker Aid (fatigue, fevers, rash, pain, stiffness, swelling/warmth) or any known conditions that may be occurring along with the JIA.
Discussion Guides
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Diagnosis Journey Discussion Guide
Still looking for a diagnosis? It's ok, it's not always an easy road, but use this aid patient/family and health professional designed guide to get on the right path.
Testing - Preparation & Results Discussion Guide
Blood tests, imaging, and other tests. It can be confusing and even overwhelming at times. Use this discussion guide to help steer the conversation to ensure all your questions are answered.
In collaboration with:
Thank you to Novartis for supporting this initiative.
