APPENDIX 1.

List of 27 items included in Round 1 of Delphi survey.

Coping with administering medication
Coping with long-term chronic disease
Costs of care
Eye manifestations of JIA
Fatigue
Growth and maturation
Imaging of joints (magnetic resonance imaging, ultrasound, radiographs)
Effect on ability to attend school or work
Effect on ability to participate in normal life situations and roles
Effect on ability to perform activities of daily living
Effect on cognition
Effect on emotional well-being
Effect on independence/autonomy
Effect on level of physical activity
Effect on participation (leisure)
Effect on physical appearance
Effect on relationships
Joint damage or deformity
Joint stiffness
Joint swelling/redness/warmth
Laboratory tests of inflammation
Medication side effects
Occurrence of inflammatory signs outside of the joints (skin, rash, fever)
Pain
Patient’s subjective perception of his/her health
Quality of sleep
Restriction in joint range of motion.
  • JIA: juvenile idiopathic arthritis.