Overview of quality of life questionnaires used per age range. At each time point, all questionnaires are provided
| Age range | 2–3 years | 4 years | 5–7 years | 8–10 years | 11–12 years | 13–16 years |
| Parent about parent | Parent about parent | Parent about parent | Parent about parent | Parent about parent | Parent about parent | |
| Sociodemographics* | General | General | General | General | General | General |
| Parental distress† | DT-P | DT-P | DT-P | DT-P | DT-P | DT-P |
| Parent about child | Parent about child | Parent about child | Parent about child | Parent about child | Parent about child | |
| QOL child | PedsQL (2–4) | PedsQL (2–4) | PedsQL (5–7) | |||
| Psychosocial adjustment | SDQ (2–3) | SDQ (4–18) | SDQ (4–18) | SDQ (4–18) | SDQ (4–18) | SDQ (4–18) |
| Problems with medication and compliance | Medication and compliance | Medication and compliance | Medication and compliance | |||
| School | School | School |
| Child | Child | Child | Child | Child | Child | |
| QOL child | PedsQL (8–12) | PedsQL (8–12) | PedsQL (13–18) | |||
| Psychosocial adjustment | SDQ (11–16) | SDQ (11–16) | ||||
| Problem with medication and compliance | Medication and compliance | Medication and compliance | Medication and compliance | |||
| School | School | School | School |
*Once at baseline.
†By both parents, if applicable.
DT-P, Distress Thermometer for Parents; PedsQL, Paediatric Quality of Life Inventory; QOL, quality of life; SDQ, Strengths and Difficulties Questionnaire.