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OP0347 Share decision making aid for juvenile idiopathic arthritis: moving from informative patient education to interactive critical thinking
  1. Y. El Miedany1,2,
  2. H. Lotfy3,
  3. N. El Aroussy1,
  4. D. Mekkawy1,
  5. S.I. Nasef4,
  6. W. Hassan5,
  7. Y. Farag3,
  8. S. Almedany6,
  9. G. El Deriny7,
  10. M. Eissa8,
  11. M. El Gaafary9,
  12. on behalf of PRINTO Egypt
  1. 1Rheumatology and Rehabilitation, School of Medicine Ain Shams University, Cairo, Egypt
  2. 2Rheumatology, Darent Valley Hospital, Dartford, UK
  3. 3Pediatrics, School of Medicine Cairo University, Cairo
  4. 4Rheumatology and Rehabilitation, School of Medicine Suez Canal University, Ismaillia
  5. 5Rheumatology and Rehabilitation, School of Medicine Banha University, Banha
  6. 6Rheumatology and Rehabilitation, School of Medicine Tanta University, Tanta
  7. 7Pediatrics, School of Medicine Alexandria University, Alexandria
  8. 8Rheumatology and Rehabilitation, School of Medicine Cairo University
  9. 9Community and Public Health, School of Medicine Ain Shams University, Cairo, Egypt


Background Shared decision making (SDM) is an emerging trend in paediatrics. Currently available SDM interventions are mere information on the disease or medication and often fail to engage the children in the medical decision process. It has been suggested that future decision aids should consider developing separate more appropriate tools in order to better engage the children.

Objectives To develop, and evaluate an illustrated and interactive evidence-based SDM aid for children living with inflammatory arthritis, able to inform them about the pros and cons of their disease as well as the available treatment options, and help them to make an informed shared decision.

Methods A multidisciplinary team defined criteria for the SDM as to design, medical content and functionality, for children. Development was according to the international standard (IPDAS). Eight categories emerged as highly important for shared decision making: 1. What is arthritis; 2. Why do we treat arthritis; 3. What are my targets?; 4. What are the available treatment options?; 5. Progressometer/my chances of improvement; 6. How soon will the medications kick in and how to take them; 7. Potential side effects; 8. For how long shall I take the medication. Each category is supported by simple illustrations showing the state of the joint in the different scenarios whether the child take treatment or not, whereas at the end of each category the child is asked to make a decision in view of the information given. 94 children with juvenile idiopathic arthritis, evaluated the tool, in a randomised controlled study, in comparison to control group composed of 95 patients treated according to standard protocols.

Results The shared decision making aid was developed to offer information about the disease, the risks and benefits of treatment. 97.5% of the children included reported comprehensibility of >90/100. the progressometer helped the children identify the importance of taking treatment for their disease. The patients’ adherence to anti-rheumatic therapy was significantly (p<0.01) higher in the SDM group, whereas stopping DMARDs for intolerability was significantly (p<0.01) higher in the control group at 12 months of treatment. There was significant improvement in the functional ability as well as quality of life measures in the SDM group (p<0.01), whilst absence from school was significantly higher in the control group (p<0.01)

Conclusions This Illustrated-interactive SDM aid for children living with idiopathic inflammatory arthritis was found to be a simple, user-friendly tool which can be implemented in standard clinical practice. The illustration and interactive style made it more attractive to the children. The developed SDM offered the children evidence-based information about the pros and cons of treatment options, improved their understanding of the disease, communication with their treating clinician as well as their ability to make an informed decision.

Disclosure of Interest None declared

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