Table 3.
Self-reported secondary outcome measures by assessment and participant type
| Outcome | Participants | Measure | Items (n) | Baseline | 6-month | 12-month |
|---|---|---|---|---|---|---|
| Knowledge and fear of seizures | Patients; carers | Epilepsy Knowledge and Management Questionnaire—Fears subscale72 | 5 | ✓ | – | ✓ |
| Knowledge of what to do when faced with a seizure | Patients; carers | Items from Thinking About Epilepsy Questionnaire73 | 3 | ✓ | – | ✓ |
| Confidence managing seizures/epilepsy | Patients; carers | Epilepsy Mastery Scale74 (P); Parents Response to Child Illness Scale—Condition Management subscale75(C) | 6 | ✓ | ✓ | ✓ |
| Quality of life | Patients | Quality of Life in Epilepsy Scale-3176 | 31 | ✓ | ✓ | ✓ |
| Distress | Patients; carers | Hospital Anxiety and Depression Scale77 | 14 | ✓ | – | ✓ |
| Seizure control | Patients | At baseline, Thapar's Seizure Frequency Scale for the prior 12 months.78At follow-up, patients will be asked for number of seizures (of any type) since the last assessment and dates of the first and most recent* | 1 | ✓ | ✓ | ✓ |
| Felt Stigma | Patients; carers | Stigma of Epilepsy Scale79 80 | 3 | ✓ | – | ✓ |
| Burden | Carers | Zarit Caregiver Burden Inventory81 | 22 | ✓ | ✓ | ✓ |
| Activation | Patients; carers | Patient Activation Measure82 | 13 | ✓ | – | ✓ |
| Health economics | Patients | Client Service Receipt Inventory83 and EQ-5D 84 | 13 | ✓ | – | ✓ |
| Feedback on trial participation | Patients; carers | Adapted from Magpie Trial85 | 3 | – | – | ✓ |
*To assist patients to be able to provide this information, they will be offered a seizure diary at their baseline appointment.