Transitioning the JRA Patient to an Adult Rheumatologist


Juvenile Rheumatoid Arthritis (JRA) is a chronic inflammatory autoimmune disorder that causes the immune system to attack itself.  It is a type of arthritis that occurs in children 16 years of age and younger.  In addition, it is a painful disease that causes joint swelling, redness, and stiffness, which could lead to the loss of mobility and destruction of joints.  There is no known cause of this disorder; however, patients with JRA may also be at a greater risk of developing other autoimmune diseases.

Pediatric rheumatologists provide a standard-of-care to maintain steady management of autoimmune disorders, to prevent long-term complications.  These physicians develop a plan to educate families about prevention and to negotiate the transition to adult-centered medical care.

What is transition health care?

Transition health care starts prior to age 18.  It is an organized movement of adolescents with chronic health conditions from pediatric care to adult orientated health care.  The purpose of transition health care is to optimize health by providing uninterrupted service to young adults, as well as preventing harmful threats to their health.

What age to begin pre-transition?

There is no definite age to begin pre-transitioning.  It mainly depends on the readiness of the patient.  However, the recommended age to start planning for this process is 16 years old.  During this process, parents should start teaching their adolescent that he/she has a responsibility to be in charge of his/her health.  The teen should be encouraged to become more independent and should be taught self-caring skills about medication, especially when it comes to knowing doses, frequencies and the purpose for the medicine.  Also, communication is a key element in this process; if the teen can successfully communicate with the doctor that would be a tremendous factor in a smooth transition.

Transitioning strategies to avoid problems in the future:

  • Understanding that transitioning is a process that takes time and patience
  • Transfer when the disease is well controlled
  • Transfer to a facility that accepts your health care plan
  • Discussing any concerns with only those individuals involved in developing a transition plan
  • Avoid having too many life changing events (e.g., leaving for college, financial issues, legal issues) occur during this process
  • Encouraging your child to attend doctor visits without  you
  • Teaching your child how to communicate directly with his/her doctor when they are experiencing any type of health issues

How to choose an adult rheumatologist?

The most common way many patients seek to find an adult rheumatologist is by asking their pediatric rheumatologist to refer them.  Your doctor can match you with a physician that is suitable to help you with your condition.

Other ways include:

  • Contacting your insurance company
  • Contacting the American College of Rheumatology
  • Check the current health care provider’s handbook to find a physician in your area
  • Visit hospital websites and conduct searches
  • Use a nationally know website to find a physician by specialty and location
  • Asking friends and family members for recommendations

It is very important to understand that not all doctors accept the same insurance plans.  Therefore, when looking for an adult rheumatologist, it is your responsibility to call each office to verify that the doctor participates in your health care plan.

What to expect from an adult clinic?

  • In-depth longer visits
  • The doctor expects the patient to have a certain level of maturation
  • The doctor expects the patient to have primary knowledge of his/her disease and a sense of what is going on with his/her current condition
  • The doctor expects a certain compliance for medication
  • The doctor would like to know the patient’s expectations for his/her health in the future
  • The doctor expects the patient to make important decisions as a young adult

Conclusion

Transitioning may be a frivolous subject to some, but for adolescents suffering from chronic autoimmune disorders, it is a critical issue.  These adolescents should have the best transition possible.  It is very important to start planning as soon as you think your child may be ready.  Do not wait until the last minute and have the pediatric rheumatologist initiate the transition process for you. For that reason, poor preparation may lead to a medical crisis occurring within the first year, while the new patient-doctor relationship has not fully developed.

About The Author

Jekia (Kia) Cox is a student working at the John’s Hopkins Arthritis Center.  She is a senior at Towson University studying Biology with a concentration in Cellular/Molecular Biology.  After graduating she would like to attend dental school to persue a career in Orthodontics.

Updated: January 29, 2014

Victoria Ruffing, RN

About Victoria Ruffing, RN

Ms. Ruffing has been a member of the Arthritis Center since 2000, currently serving as the Nurse Manager. She is a critical member of our patient care team.