Juvenile Idiopathic Arthritis (JIA)/Subgroups Family/Health Professional Communication Toolkit - Diagnosis & Treatment Journey
Improving Family, Juvenile, & Health Professional Office Visits
This toolkit was developed to improve decision making between JIA families and health professionals during any phase of the healthcare journey and for use with any provider/specialty. Communication Aids & Discussion Guides were co-created with:
- Parents of kids with JIA
- JIA patients/now adults
- Pediatric Rheumatologists & Fellows
- Rheumatologist Nurse Practitioners
- Physical Therapists
- Occupational Therapists
- Ophthalmologists
- Pediatricians
All tools are paired with associated guidance how to use the materials and best prepare for conversations in the office visit.
The Toolkit, including design, guidance, and examples, was co-created with Purple Playas Foundation.
Communication Toolbox: Communication Aids & Discussion Guides
Co-created with JIA families, patients, and a variety of other pediatric healthcare specialists, these aids can be used for any phase of your journey, whether looking for a diagnosis or if you've lived with this for many years.
How to Use the Toolkit
These are communication planning tools. They were designed to help patients and families think about what to talk about during the visit well in advance of the visit.
- Order the Toolkit above. You will receive an email that will include all the links to each tool and instructions.
- Each aid and guide has fillable form sections. They can be filled out on a computer or mobile device and saved. They can also be printed if you prefer to hand write your responses.
- Some portions you/your family should complete, save or print, and bring with you to the visit. Some parts will be completed with the healthcare professional during the visit.
- Send prior to the visit. If possible, it is recommended to send your portion of the completed aids to your health provider prior to the visit (like through the portal), but it's not necessary.
- Use these along with photos and videos. Remember it's also important to take photos and videos that show any signs of swelling, mobility challenges (walking, crawling, sitting difficulties, etc.)
- Use to improve communication with any health professional. They can be reused with any health professional you/your family may visit (i.e., pediatrician, rheumatologist, physical therapist, ophthalmologist, nurse, etc.)
Communication Aids Included in the Toolkit:
Appointment Plan Communication Aid
This aid was designed to be the ‘main aid’ in the toolkit and may be paired with any other aid or discussion guide. It is recommended to be used during the first visit with any health professional and any time goals for care need to be revisited.
Key Points:
- "Primary Aid": Use it with any other Aid or Discussion Guide when goals and expectations need to be discussed.
- Determine the purpose of your visit, which will guide the conversation (i.e., referral, follow up, disease management)
- Help determining patient/family goals and health professional goals
- Establish a healthcare team
- Establish communication protocol after 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.
Key Points:
- Track personal journey with the 6 most common symptoms associated with Juvenile Idiopathic Arthritis and detail the symptom severity, length, causes, and anything that improve symptoms
- Use with the Symptoms Log Worksheet to helps summarize the information needed for this form
- Can also be used along with the Co-Existing Conditions & Additional Symptoms Communication Aid, which can be useful for those who have many symptoms not on this aid
Treatment Discussion Communication Aid
This aid was designed to help make decisions about current treatments, options for future ones, and other questions and concerns related to medications or therapies. It provides many potential topics and conversation starters, as well as preferences about treatments that the health professional should consider. While the first page should ideally be completed prior to your visit, page two - which is a benefits and risks conversation - should be done during the office visit.
Key Points:
- Explore treatment options, therapies, and adherence tactics
- Plan ahead for decision-making conversations with sample questions, concerns, and treatment options
- Discuss treatment-specific goals and preferences
Co-Existing Conditions & Additional Symptoms Communication Aid
This aid can be used to help you/your child summarize additional symptoms that may not be as common in all types of JIA, as covered on the Symptoms Summary Aid. It covers symptoms related to urinary/kidney, gastrointestinal, eye, ear/mouth/nose/throat, chest, social-emotional, and other skin involvement not covered in the other symptoms aid.
Key Points:
- Use to record any symptoms outside of the core 6 outlined on the Symptoms Tracker Aid
- Prepare for the visit with sample questions provided
- Discuss potential referrals to other types of health professionals
- Possible follow up questions (preparing for other visits, possible tests, etc.)
Discussion Guides Included in the Toolkit:
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Diagnosis Journey Discussion Guide
This discussion guide aims to prepare you/your child to navigate the diagnosis journey. It is filled with recommendations from health professionals, parents of kids with JIA, and young adults diagnosed with JIA and who are impacted by the disease.
It is highly recommended to also use the Symptoms Summary Communication Aid and the Co-Existing Conditions and Additional Symptoms Aid to track any disease activity.
Key Points:
- Learn more about the types of health professionals that may be involved
- Find tips to recognize symptoms and identify disease activity
- Factors to be aware of that could delay diagnosis
- Tips to help you/your child get the answers you need
Testing - Preparation & Results Discussion Guide
This discussion guide aims to prepare you/your child to navigate testing (x-rays, MRI’s, blood tests, etc.) Testing is used throughout the journey - from diagnosis to monitoring disease activity to helping determine if remission has been achieved. It is filled with recommendations from health professionals, parents of kids with JIA, and young adults diagnosed with JIA and who are still navigating their journey.
Key Points:
- Prepare for testing and understand why the health professional is ordering certain tests
- Identify if further testing is needed
- Prepare for your office visit with sample questions and overviews of potential tests that may be ordered
- Guide conversations with health professionals that can be helpful in seeking tests and analyzing results
More About the Project
These aids were created based on a series of focus groups that included JIA families/patients, pediatricians, rheumatologists and fellows, nurse practitioners, physical therapists, occupational therapists, and ophthalmologists. Thank you to:
Families & Persons Diagnosed with JIA
- Christopher Cloud JIA Patient, now adult
- Sarah Cloud Parent of JIA Patient
- Rochelle Lentini Parent of JIA Patient
- Janet O’Brien Parent of JIA Patient
- Erin Vago JIA Patient, now adult, family of JIA Patient
- Katherine Wilder JIA Patient, now adult
- Kirsten Wilder Parent of JIA Patient
Health Professionals
- Sarah Baluta, MD Pediatric Rheumatology Fellow
- Kevin Baszis, MD Pediatric Rheumatologist
- Hermine Brunner, MD Pediatric Rheumatologist
- Kevin Hardy, PT, DPT Physical Therapist
- Dina Kafisheh, MD Pediatric Rheumatology Fellow
- Nausheen Khuddus, MD Pediatric Ophthalmologist
- Barbara Kienzle, BSN, RN Pediatric Rheumatology Nurse Navigator
- Maleewan Kitcharoensakkul, MD Pediatric Rheumatologist
- Grace Levy-Clarke, MD Ophthalmologist
- Lauren Newhall, DO Pediatrian
- Willem Stegeman, PT, DPT, MTC, CEAS Physical Therapist
- Carolyn Zic, MSN, FNP-BC Pediatric Rheumatology Nurse Practitioner
Special thanks to:
- Washington University rheumatologists for pilot testing the Appointment Plan Aid in clinic and for extended review and feedback of all aids and discussion guides.
In collaboration with:
Thank you to Novartis for supporting this initiative.
