Participant Assessmenta | Baselineb | 4 month | 12 month |
---|---|---|---|
Initials | X | Â | Â |
Date of birth | X | Â | Â |
Sex | X | Â | Â |
Inclusion criteria | X | Â | Â |
Contact information | X | Â | Â |
Interview Characteristics | |||
Method of assessment | X | X | X |
Participant or proxy | X | X | X |
Alive at scheduled time of assessment | X | X | X |
Telephone Interview for Cognitive Status (TICS) [63] | X | X | X |
Seizure characteristics[45] | |||
Consciousness | X | Â | Â |
Onset | X | Â | Â |
Frequency | X | X | X |
Phenomena | X | X | X |
Precipitants | X | Â | Â |
Family history | X | Â | Â |
Epilepsy-related medical history | X | Â | Â |
New medical problems | Â | X | X |
Modified Cumulative Illness Rating Scale [66] | X | X | X |
Birth History | X | Â | Â |
Medication | X | X | X |
Investigations (EEG, CT, MRI etc) | X | X | X |
Accidents/falls/injuries | Â | X | X |
Access to services | Â | X | X |
Final diagnosis | Â | X | Â |
Developmental milestones | Â | Xc | Xc |
Cognitive assessment (optional) | Â | X | X |
Demographic characteristics | |||
Born in Australia | X | Â | Â |
Years lived in Australia | X | Â | Â |
Language other than English spoken at home | X | Â | Â |
Marital status | X | X | X |
Number of financially dependent children | X | Â | Â |
Social/financial living status | X | X | X |
Medical History | |||
Psychotropic medications | X | X | X |
Brief Illness Perceptions Questionnaire [48] | X | X | X |
WHO Disability Assessment Schedule [67] | Xa | Xa | Xa |
Strengths and Difficulties Questionnaire [50] | Xc | Xc | Xc |
Alcohol consumption: Audit Alcohol Use Disorders Identification Test (AUDIT-C) [51] | Xa | Xa | Xa |
Education and Employment | |||
Highest qualification | X | X | X |
Current student | X | X | X |
Absences from education | X | X | X |
Lifetime occupation | X | X | X |
Current occupation | X | X | X |
Job content questionnaire [53] | Xa | Xa | Xa |
Financial Situation | |||
Household benefits | X | X | X |
Main source of income | X | X | X |
Insurance | X | X | X |
Economic hardship | X | X | X |
Income | X | X | X |
Transport | |||
Vehicles driven and frequency | Xa | Xa | Xa |
Transport to work/education | Xa | Xa | Xa |
Drive for work | Xa | Xa | Xa |
Childcare | |||
Location | Xc | Xc | Â |
Duration | Xc | Xc | Â |
Absence from childcare | Xc | Xc | Â |
Support | |||
Confiding relationship | X | X | X |
Family adaptation, partnership, growth affection, resolve questionnaire [55] | X | X | X |
Inventory of Family Protective Factors [56] | X | X | X |
Social media use | X | X | X |
Mood | |||
Hospital Anxiety and Depression Scale [57] | Xa | Xa | Xa |
General Health Questionnaire | Xc | Xc | Xc |
Stigma | |||
Modified HIV Stigma Scale [59] | X | X | X |
Disclosure of epilepsy diagnosis | X | X | X |
Sleep | |||
Pittsburgh Sleep Quality Index [60] | X | X | X |
Health related quality of life | |||
EuroQol [47] | Xa | Xa | Xa |
Quality of Life in Epilepsy for Adolescents [61] | Xb | Xb | Xb |
Longitudinal Study of Australian Children [62] | Xd | Xd | Xd |