Overview of the included outcomes, measures and case-mix variables (n=6), age-range specific
| Age ranges | Outcome | Measures | Respondent |
| 0–5 years | Survival, HRQoL, sleep, pain, mobility, development, communication, hearing, social functioning, vision, growth, nutrition, school attendance | ICHOM Standard Measure: Survival | Clinician |
| CDC’s Developmental Milestones Checklist (available at: https://www.cdc.gov/ncbddd/actearly/milestones/index.html) | Clinicia and patient/proxy | ||
| Visual Acuity Test—E-chart | Clinician | ||
| WHO Growth Chart (Early Years) (available at: https://www.who.int/childgrowth/standards/en/) | Clinician | ||
| School attendance | Patient/proxy | ||
| 6–12 years | Survival, HRQoL, sleep, pain, mobility, development communication, social functioning, vision, growth, nutrition, school attendance, cognition/intelligence, mood, mental health, coping, fitness | ICHOM Standard Measure: Survival | Clinician |
| PROMIS Parent Proxy Scale V.1.0—Global Health 7+2 (available at: www.healthmeasures.net) | Patient/proxy | ||
| Visual Acuity Test—Snellen-chart (E-chart where Snellen cannot be used) | Clinician | ||
| WHO Growth Chart (School-Age Years) (available at: https://www.who.int/childgrowth/standards/en/) | Clinician | ||
| School attendance | Patient/proxy | ||
| PROMIS Parent Proxy Scale V.1.0—Cognitive Function 7a (available at: www.healthmeasures.net) | |||
| 13–17 years | Survival, HRQoL, sleep, pain, mobility, development, communication, social functioning, growth, nutrition, school attendance, cognition/intelligence, mood, mental health, coping, fitness, self-esteem, self-efficacy | ICHOM Standard Measure: Survival | Clinician |
| WHO Growth Chart (School-Age Years) (available at: https://www.who.int/childgrowth/standards/en/) | Clinician | ||
| School attendance | Patient | ||
| PROMIS Parent Proxy Scale V.1.0—Cognitive Function 7a (available at: www.healthmeasures.net) | Patient/proxy | ||
| PROMIS Pediatric Scale V.1.0—Global Health 7+2 (available at: www.healthmeasures.net) | Patient | ||
| NIH Toolbox—Self-Efficacy CAT Ages 13–17 V.2.0 (available at: www.healthmeasures.net) | Patient | ||
| Patient | |||
| 18–24 years | Survival, HRQoL, sleep, pain, mobility, communication, social functioning, vision, hearing cognition/intelligence, mood, mental health, coping, fitness, self-esteem, self-efficacy | ICHOM Standard Measure: Survival | Clinician |
| PROMIS Short Form V.1.0—Sleep Disturbance 4a (available at: www.healthmeasures.net) | Patient | ||
| PROMIS Pool V.2.0—Sexual Function and Satisfaction: Screeners (available at: www.healthmeasures.net) | Patient | ||
| PROMIS Short Form V.2.0—Cognitive Function 4a (available at: www.healthmeasures.net) | Patient | ||
| AQoL-8D (available at: http://www.aqol.com.au/choice-of-aqol-instrument/58.html) | Patient | ||
| Case-mix variable | |||
| Age (ICHOM Standard Measure: Age) | Patient year and month of birth. In what year and month were you born? RESPONSE: MM/YYYY | Patient/administrative | |
| Sex (ICHOM Standard Measure) | Biological sex of patient at birth. Please indicate your biological sex at birth. RESPONSE: male/female/unknown | Patient/administrative | |
| Diagnosis (International Statistical Classification of Diseases and Related Health Problems (ICD)) | Prior and current diagnosis of disease or no presence of diagnosis. Please list any prior and current conditions. RESPONSE: ICD-10 or SNOMED-CT/None | Clinician | |
| Parent education level (ICHOM Standard Measure: Education (as defined by ISCED schooling levels)/Proxy measure for socioeconomic status on other ICHOM sets. | Please list highest level of education of either parent. RESPONSE: None/Primary/Secondary/Tertiary | Patient and/or primary caregiver | |
| Primary caregiver (Non-standard measure) | Please state the primary caregiver (check all that apply). RESPONSE: Mother or Father/Other family member/Self/Other | Patient and/or primary caregiver | |
| Respondent (Non-standard measure) | Who is providing this information about the patient? RESPONSE: Mother or Father/Other family member/Self/Other | Patient and/or primary caregiver | |
These case-mix variables are recommended for all children, with an expectation that additional variables may need to be collected to allow context-specific benchmarking in some settings during implementation.
AQoL-8D, Assessment of Quality of Life-8 Dimensions; CDC, Centers for Disease Control and Prevention; ICHOM, International Consortium for Health Outcomes Measurement; PROMIS, Patient-reported Outcomes Measurement Information System.