Table 1

Overview of the included health outcomes and instruments/tools for the specific ages with agreement from health professionals and parents

Age in yearsAge-rangesEndorsed to be important by the Consumer Open Review
0123456789101112131415161718192021222324HP
(%)
Parents*
(%)
Health outcomes included in OPH Standard Set for the specific age-ranges as agreed on
MentalCognition /intelligence9886
Mood91
Mental Health95
Coping91
Self-efficacy86
Self-esteem90
SocialDevelopment8895
School Attendance77
Communication93
HRQoL91
Social Functioning92
PhysicalEating9291
Hearing88
Vision99
Nutrition91
Growth88
Survival88
Mobility93
Pain-free89
Sleep94
Fitness88
Sexual Health76
Instruments and tools included in the OPH Standard Set in order to measure the agreed-on specific health outcomesPROMCN
CDC Milestone Checklistxx10–29
Visual Acuity test—E-ChartxN/A
Visual Acuity test—Snellen-ChartxN/A
WHO Growth Charts—early yearsx6
WHO Growth Charts—school age yearsx6
School attendancex1
ICHOM Standard Measure: Survivalx3
PROMIS Parent Proxy Scale—Global healthx9
PROMIS Parent Proxy short form—cognitive functionx7
PROMIS Pediatric Scale—global healthx9
NIH Toolbox—self-efficacy CATx10
PROMIS Short Form—sleep disturbancex4
PROMIS Pool—sexual fct. and satisfaction-screenerx3
PROMIS short form—cognitive functionx4
AQoL-8Dx35
Total number of questions (n) within age-specific tool packages20–39253149
Time to complete (min)30–4124–3026–3213–23
Agreement with the age-specific toolset from HP (%)94989694
  • Information and definitions for all variables, data sources and recommended timeline for data collection is provided in the reference guide: https://connect.ichom.org/standard-sets/pediatric-overall-health/.

  • *Parents and caregivers.

  • √, included based on consensus, grey colour indicates that the respective health outcome is measured at this age, since it is measured by one of the instruments/tools that were agreed upon, and light grey colour indicates that the E-chart can be used as alternative to the Snellen Chart depending on what works best for the child; AQoL-8D, Assessment of Quality of Life-8 Dimensions; C, clinician reported; CDC, Centers for Disease Control and Prevention; HP, health professionals; HRQoL, health-related quality of life; ICHOM, International Consortium for Health Outcomes Measurement; N, number of questions; N/A, not applicable; NIH, National Institutes of Health; PROMIS, Patient-reported Outcomes Measurement Information System.