Table 3

Self-reported secondary outcome measures by assessment and participant type

OutcomeParticipantsMeasureItems (n)Baseline6-month12-month
Knowledge and fear of seizuresPatients; carersEpilepsy Knowledge and Management Questionnaire—Fears subscale725
Knowledge of what to do when faced with a seizurePatients; carersItems from Thinking About Epilepsy Questionnaire733
Confidence managing seizures/epilepsyPatients; carersEpilepsy Mastery Scale74 (P); Parents Response to Child Illness Scale—Condition Management subscale75(C)6
Quality of lifePatientsQuality of Life in Epilepsy Scale-317631
DistressPatients; carersHospital Anxiety and Depression Scale7714
Seizure controlPatientsAt 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 StigmaPatients; carersStigma of Epilepsy Scale79 803
BurdenCarersZarit Caregiver Burden Inventory8122
ActivationPatients; carersPatient Activation Measure8213
Health economicsPatientsClient Service Receipt Inventory83 and EQ-5D 8413
Feedback on trial participationPatients; carersAdapted from Magpie Trial853
  • *To assist patients to be able to provide this information, they will be offered a seizure diary at their baseline appointment.