Table 1. Survey versions, variables, and questionnaires.
| Variables | Measures | Adults Age ≥ 18 y |
Children/ Teenagers Age 10–17 y |
Children Age 6–9 y |
Children Age 1–5 y |
|---|---|---|---|---|---|
| Self-Report | Proxy | ||||
| Sociodemographic | Sociodemographic questionnaire | ✓ | ✓ | ✓ | ✓ |
| Clinical | Clinical questionnaire | ✓ | ✓ | ✓ | ✓ |
| Physical activity and sports | Physical activity questionnaire | ✓ | ✓ | ✓ | ✓ |
| Pain | Pain questionnaire | ✓ | ✓ | ✓ | ✓ |
| Quality of life | A36 Hemofilia-QoL | ✓ | – | – | – |
| CHO-KLAT | – | ✓ | ✓ | – | |
| Functionality | HAL | ✓ | – | – | – |
| PedHAL | – | ✓ | ✓ | – | |
| Emotional distress | PROMIS Anxiety | ✓ | – | – | – |
| PROMIS Depression | ✓ | – | – | – | |
| Illness perceptions | IPQ-R | ✓ | ✓ | – | – |
Abbreviations: CHO-KLAT, Canadian Haemophilia Outcomes-Kids' Life Assessment Tool; HAL, Haemophilia Activities List; IPQ-R, Illness Perception Questionnaire-Revised; PedHAL, Pediatric Haemophilia Activities List; PROMIS, Patient-Reported Outcomes Measurement Information System.