Table. Outcome Measurement Tool for Each Domain.
| Domain Group | Tool | Data Source | |
|---|---|---|---|
| Age <8 y | Age ≥8 y | ||
| Functional | |||
| Vision | Snellen chart (for age ≥6 y)a | Snellen chart | Clinician |
| Ocular symptoms | Y/N questions | Y/N questions | Patient or parentb |
| Oral continence | Y/N questions matched to FACE-Q Kids scale | FACE-Q Kids mouth function scale | Patient or parentb |
| Speech | Y/N questions | Y/N questions | Patient or parentb |
| Pain/discomfort | Numeric VAS (for age ≥4 y) | Numeric VAS | Patient |
| Appearance | |||
| Overall | Nil | FACE-Q Kids overall face appearance scale | Patient |
| Rest of appearance domain | eFACE (for age ≥4 y) | eFACE | Clinician |
| Psychosocial | |||
| Photographs/social media | Y/N questions | Y/N questions | Patient or parentb |
| Education/support | Y/N questions | Y/N questions | Patient or parentb |
| Rest of psychosocial domain | PROMIS Global Health (for age ≥4 y)c | PROMIS Global Health | Patient or parentb |
| PROMIS Peer Relationships (for age ≥4 y)c | PROMIS Peer Relationships | ||
| Burden of care | |||
| Complications | Clinical records | Clinical records | Clinician |
| Revision procedures | Clinical records | Clinical records | Clinician |
Abbreviations: PROMIS, Patient Reported Outcomes Measurement Information System; VAS, visual analog scale; Y/N, yes/no.
a
In patients younger than 5 years, alternative methods for visual acuity assessment should be used according to departmental policy, but this test result does not need to be recorded in the data collected for the standard set.
b
In patients younger than 8 years, a parent or guardian would be asked to complete the response as a proxy.
c
The proxy PROMIS measurement tools would be used in patients between 4 and 8 years of age and would be completed by a parent or guardian.