Table 1.

Summary of domains identified by literature review and participant input.

Domains Organized by OMERACT Core AreasSystematic Literature Review*Web-survey of PtsWeb-survey of ParentsDisease Impact Idea GenerationODB TeensODB Young AdultsODB Parents of Young ChildrenODB Parents of Older Children
Life effect
  ICF domains: activity and participation
  Quality of life
  Patient perception of health
  Loss of ability to work
  Psychosocial impact
  Secondary impact on family/caregivers
Resource use/economic effect
  Direct/indirect (productivity)
  Intangible costs
Pathophysiological manifestations
  ICF: body function and structure
  Organ function
  Reversible manifestations
  Irreversible manifestations
  Surrogate outcomes
  • * Systematic literature review of juvenile idiopathic arthritis studies found domains/subdomains measured to include joint count, physician’s global assessment, functional ability, inflammatory markers, patient’s/caregiver’s global assessment, biomarkers, health-related quality of life, adverse effects, adjustment/psychosocial health, flare, damage, fatigue, participation, ability to stop/decrease medications, growth/maturation, mental health, and bone health. Pts: patients; ODB: online discussion boards; ICF: International Classification of Functioning, Disability and Health.