Table 1.
Summary of instruments by study sample.
| Instrument | Sample 1, Sample Recruited via Hospital | Sample 2, Online Panel Population Sample | Sample 3, Online Disease Group Sample | |||
|---|---|---|---|---|---|---|
| Initial | Follow-Up | Initial | Follow-Up | Initial | Follow-Up | |
| Demographic and non-HRQoL instruments | ||||||
| Sociodemographic questions | X | X | X | |||
| SDQ | X | X | X | |||
| EQ-HWB | X | X | X | |||
| Core HRQoL instruments | ||||||
| PedsQL | X | X | X | X | X | X |
| TANDI (if <=3 years) | X | X | X | X | X | X |
| EQ-5D-Y 3L & 5L original (if >=5 years) | X | X | X | X | X | X |
| EQ-5D-Y 3L & 5L adapted (if <=4 years) | X | X | ||||
| EQ-5D-Y 3L original and adapted or EQ-5D-Y 5L original and adapted (if <=4 years) | X * | X * | X * | X * | ||
| CHU9D | X | X | X | X | X | X |
| Global Health Measure (single item) | X | X | X | X | X | X |
| Additional HRQoL instrument blocks | ||||||
| HUI 2/3 and EQ-5D-5L (>11 years) | X * | X * | X * | X * | ||
| AQoL-6D (>4 years) | X * | X * | X * | X * | ||
| PROMIS-25 (>4 years) | X * | X * | X * | X * | ||
| Disease specific instruments | ||||||
| Disease specific instruments (as per the recommended age range of the instrument) | X * | |||||
X- indicates the instrument will be collected from the sample/time point. * Participant will only receive, if allocated, instrument based on disease group, and/or randomization to receive additional instrument, and/or randomization to receive EQ-5D-Y 3L original and adapted or EQ-5D-Y 5L original and adapted. Abbreviations: HRQoL health-related quality of life, SDQ Strengths and Difficulties Questionnaire, EQ-HWB EQ Health and Wellbeing Short Version, PedsQL Paediatric Quality of Life Inventory, TANDI Toddler and Infant Questionnaire, EQ-5D-Y EQ-5D Youth, CHU9D Child Health Utility, HUI2/3 Health Utilities Index Mark 2/3, EQ-5D-5L, AQoL-6D Assessment of Quality of Life, PROMIS-25 Patient-Reported Outcome Measurement Information System 25.