New Task Force Recommends Shared Decision-Making for Parents and Patients with Juvenile Idiopathic Arthritis


According to a recent article in BioMed Central, an international task force formed in 2018 created guidelines for the treatment of juvenile idiopathic arthritis (JIA).

Treatment targets were identified with a plan to reach specific therapeutic goals. The strategy was called Treat-to-Target (T2T). Recommendations of the task force were given with the intent of providing guidance for treatment approaches in order to improve care of the patients in clinical practice.

Unresolved Issues

To date, three issues remain unresolved.

First, the task force has been unable to identify a “best” target or target definition. It is the task force’s decision to refrain from choosing an instrument to assess remission or inactive disease. This will be determined by the clinician.

Of course, the ultimate goal is remission or inactive disease. There are many methods of assessing whether those goals have been reached.

For one, parents and patients inform the physician of all symptoms occurring between office visits such as joint pain, fatigue, and morning stiffness.

Secondly, there is an assumption that if a treatment reaches its target it will create a ‘domino effect’ and resolve other symptoms. This assumption has not proven to be correct with respect to the patients’ fatigue, stiffness, or pain.

Additional goals of the T2T are:

  • Preventing structural damage
  • Controlling symptoms
  • Avoiding multiple medical conditions (comorbidities) or drug toxicities
  • Optimize quality of life including social participation

Although there has been significant advances in treating JIA and the children were in remission, chronic pain continued eight years after the onset of treatment.

Researchers found this to be true also with respect to fatigue. However, they did not find any correlation between disease activity and fatigue. It has been suggested that pain could be a link between fatigue and disease activity.

Shared decision-making is third on the list. Clinicians agree with patient participation. They believe that parents and patients should take an active role by declaring their personal and treatment goals.

The task force considers shared decision-making as having the parents and patients aware and agreeing to the target, therapeutic options, and apparent risks.

Some departments have added the patient’s treatment goals to their electronic medical records so that they are prominently displayed on the first page. This regimen encourages discussions about personalized treatment and sharing decisions.


Treatment under T2T means addressing many more aspects of JIA than inflammation. The treatment includes physiotherapy and strategies to cope with pain and fatigue.

Researchers believe that the T2T strategy will prove to be a standard approach for JIA.

What are your thoughts about shared decision-making? Share your stories, thoughts, and hopes with the Patient Worthy community!

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia (AML) six years ago. During this period of partial remission, Rose researched investigational drugs to be prepared in the event of a relapse. Her husband died February 12, 2021 with a rare and unexplained occurrence of liver cancer possibly unrelated to AML.

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