Table 1

Final outcome framework

Outcome domain categoriesOutcome domains
Organ system outcomesCardiovascular
Respiratory
Gastrointestinal
Neurological
Genitourinary
Infection
Skin
Developmental
Holistic outcomes Survival
Growth
Pain
Suffering
Normality
Other outcomes
Parent-focused outcomes Parental support
Other outcomes
Healthcare delivery outcomes Healthcare workers—knowledge and competence
Healthcare workers—Communication
Other outcomes
Economic outcomes Healthcare utilisation
Other outcomes
Social outcomes Psychiatric outcomes
Relationships with others
Other outcomes
  • Outcome domain categories and outcome domains added to the original framework marked in italics.