Study Shows The Shared Decision-Making Model Improves Outcomes for JIA Patients

Juvenile idiopathic arthritis (JIA) is a rare condition affecting children. Like all patients, these children are told what treatment they need and then they are expected to comply. However, researchers in Egypt believe that it may be more beneficial for patients to be more involved in the process. To some, this is a crazy concept. To others (and most patients) it makes perfect sense.

The Egyptian researchers worked to examine this theory. Spoiler alert- the results were extremely positive. This study was published in Clinical Rheumatology.

What is SDM?

Typically, doctors are the authority figure over their patients. They advise them on the best treatment approach to fit their illness and their needs. However, this process often bypasses other important characteristics of the individual patient, such as their religion, their lifestyle, their culture, their preferences, and their personal beliefs. All of these may impact which treatment would fit them best. The traditional approach is for patients to be a passive player in their health journey. From a logical standpoint- how does this make any sense?

Patients, the reason that the healthcare profession exists in the first place, should be central to all decisions.

SDM stands for shared decision-making. It’s a different, more collaborative process where both the doctor and the patient work together as partners to reach a consensus about the next steps in the patients healthcare journey.

SDM doesn’t mean that patients aren’t advised. The doctor still explains, in depth, the patient’s options. The difference is, the patient has a say in which of the options they would feel most comfortable with and which one would best align with their lifestyle and beliefs.

Perhaps the best part about this model is that it doesn’t discriminate against patients. Regardless of gender, age, or any other factor- SDM allows the patient to be involved in the process.

This new Egyptian study specifically focused on children who were diagnosed with JIA.

The Study

The researchers believed that SDM could improve patient adherence to their therapy, their school attendance, and also their clinical response to treatment.

“The idea was to move from passive patient education to interactive critical thinking.”

The researchers developed this tool based on international standards. Next, they conducted a pilot study.

Pilot Study

The aim of the pilot study was to examine whether or not the tool would be acceptable to children. The researchers came up with different categories of information that children with JIA should know and then presented it to them in an interactive way. They were given illustrations of each of the topics to help them visualize what was being taught. After each category was explained in this way, the researchers asked the children to make a decision.

There were 8 categories in total including an explanation of JIA, how its treated, what the chances are that a patient will improve, and what the potential side effects are.

After this pilot study showed that the tool was acceptable, the researchers moved into a clinical trial.

Clinical Trial

This trial took place between 2016 and 2018 at four different centers in Egypt. It included 94 children in the research group (SDM) who were 6 to 15 years of age and who had been diagnosed with JIA. Another 95 children were in the control group and were treated with standard protocols. All of the children were monitored for one year.

The results were incredible.

Trial Results

  • 97.5% said they comprehended the material
    • From a 0-100 scale, most assigned a score over 90
  • 36.8% of patients in the control group wanted to consult with a medical professional further. Only 9.6% in the SDM group desired this.
  • 99% of those in the SDM group found that the illustrations helped them to comprehend the risks of different options
  • 41% of those in the control group came to a consensus with their doctor vs 89% in the SDM group
  • 70.5% of those in the control group had adhered to their medication at a 1 year follow-up vs. 88.3% in the SDM group
  • 21.3% of children in the SDM group missed school days vs 33.7% in the control group
  • 6.4% of those in the SDM group faced intolerance to their disease-modifying anti-rheumatic drugs forcing them to stop treatment vs 18.9% in the control group.
  • Those in the SDM group were not as concerned as those in the control group about their future
  • Those in the SDM group were more able than those in the control group to cope with their daily activities
  • Those in the SDM group had better patient-reported outcomes than the control group (such as quality of life)
  • Those in the SDM group had lower disease activity than those in the control group

This study shows that SDM may be exceptionally beneficial for children as it can improve their understanding of their condition and help them to feel more in control of whats going on. By learning the pros and the cons of different treatment options, accepting the cons for the treatment they helped choose becomes easier.

You can read more about this study and SDM here.


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