Table 1.

Study outcome measures

Outcome	Data collection method	T0 Baseline	T1 Week 4	T2 Week 12	T3 Week 20
Number of eligible patients and number recruited	Case report form	✓
Discontinuation rates across both groups and reasons	Case report form	✓	✓	✓	✓
Demographic data	Questionnaire: context-specific questions about age, sex, ethnicity, and living circumstances of the participant, the type of care provided by the carer and their relationship to the participant	✓
Patterns of use of the Beyond Words booklet (intervention group only)	Questionnaire: context-specific questions		✓	✓	✓
Use of other epilepsy-related information	Questionnaire: context-specific questions	✓			✓
Quality of life as the primary outcome measure	Questionnaire: ELDQOL scale, which consists of four subscales: behaviour, seizure severity, mood and side effects32 33	✓	✓	✓	✓
Seizure severity as a secondary outcome measure	Questionnaire: ELDQOL seizure severity subscale	✓	✓	✓	✓
Seizure control as a secondary outcome measure	Seizure diary				✓
Health-related quality of life	Questionnaire: EQ-5D-5L index and visual analogue scale (EQ-VAS)—proxy version34	✓	✓	✓	✓
Health and social services and resources use	Questionnaire: context-specific resource use questions	✓			✓
Feasibility and acceptability of the study procedures	Semistructured interview				✓
Use and perceived usefulness of existing resources and services	Semistructured interview				✓
Information and self-management support needs	Semistructured interview				✓
Perceived acceptability of the intervention	Semistructured interview				✓
Perceived barriers and facilitators to the use and dissemination of the intervention in routine care	Semistructured interview				✓