Engaging children with juvenile idiopathic arthritis in shared decision-making with their doctors helps them better understand their disease and enhances their ability to make informed decisions. It can also lead to better adherence to medications, quality of life, and school attendance, according to results of a study conducted in Egypt.
The study, “Shared decision-making aid for juvenile idiopathic arthritis: moving from informative patient education to interactive critical thinking,” was published in the journal Clinical Rheumatology.
Shared decision-making (SDM) is a process where health professionals and patients work together to reach a consensus about care.
Compared with traditional care, which places doctors in a position of authority with patients playing a passive role, SDM puts patients at the center of the decision-making process.
Health care providers explain treatments and alternatives to patients and help them choose the treatment option that best aligns with their preferences, culture, and personal beliefs.
Researchers in the study developed a tool to help guide SDM in children with juvenile idiopathic arthritis (JIA) and assessed its ability to enhance the patients’ involvement in their own care, adherence to therapy, school attendance, and clinical response.
The idea was to move from passive patient education to interactive critical thinking as a more effective strategy to reach treatment decisions.
The tool was developed in three phases: initial conceptualization based on international standards (IPDAS); a pilot test to observe acceptability; and a clinical trial to evaluate its impact on adherence to therapy and outcomes for patients.
The tool covered eight categories:
- What is arthritis?
- Why do we treat arthritis?
- What are my targets?
- What are the available treatment options?
- What are my chances of improvement?
- How soon will the medications kick in and how to take them?
- What are the potential side effects?
- For how long shall I take the medication?
For each category, simple illustrations were shown to the child in order to provide the information through an interactive style. At the end of each category, the child was asked to make a decision based on the information given.
In the third part of the study, the researchers conducted a randomized and controlled clinical trial to evaluate the tool’s utility in a real clinical setting, which was carried out at four centers in Egypt, from 2016–2018.
A total of 94 JIA children were provided with the tool, and 95 others were treated according to standard protocols as a control group. The children, from 6 to 15 years old, were monitored over one year.
The vast majority of patients stated that the SDM tool helped in their decision-making, and 99% found illustrations helped to clarify the possible risks.
Overall, 97.5% of the patients reported comprehending the material, with a score greater than 90 on a scale from zero to 100.
SDM gave the children and their parents more confidence when making treatment decisions, with fewer asking to speak to doctors beforehand — 9.6% versus 36.8% in the control group.
In the SDM group, 89% of the children reported that they reached an agreement with their doctor on how to proceed with treatment, compared with 41% in the control group.
Adherence to medication significantly improved with SDM — 88.3% vs 70.5% in the control group — at one year of follow-up.
In addition, SDM-receiving children were less likely to stop their disease-modifying anti-rheumatic drugs due to intolerance (6.4% vs 18.9% in the control group). They were also more able to cope with their daily activities and less concerned about their future.
Patient-reported outcomes, including quality of life, were significantly better in the SDM group. Moreover, fewer children (21.3%) in this group were absent from school compared to the control group (33.7%). Those using SDM also tended to have lower disease activity.
“The developed SDM aid offered the children evidence-based information about the pros and cons of treatment options and improved their understanding of the disease and their ability to make an informed decision that is reflected on their adherence to therapy and better treatment outcomes,” the researchers wrote.