Table 1.

Summary of domains identified by literature review and participant input.

Domains Organized by OMERACT Core Areas	Systematic Literature Review^*	Web-survey of Pts	Web-survey of Parents	Disease Impact Idea Generation	ODB Teens	ODB Young Adults	ODB Parents of Young Children	ODB Parents of Older Children
Death
Disease							✓
Intervention
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				✓			✓	✓
Utility
Resource use/economic effect
Societal
Individual				✓			✓	✓
Healthcare				✓	✓			✓
Direct/indirect (productivity)			✓			✓
Intangible costs								✓
Pathophysiological manifestations
ICF: body function and structure	✓	✓	✓	✓	✓	✓	✓	✓
Organ function	✓
Reversible manifestations	✓	✓
Irreversible manifestations	✓			✓			✓
Biomarkers	✓
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.