Sydney Epilepsy Incidence Study To Measure Illness Consequences

Not Applicable

Completed

• Conditions: Epilepsy; Neurological - Epilepsy

• Registration Number: ACTRN12609000059268
• Lead Sponsor: The George Institute for International Health

Brief Summary

Not available

Detailed Description

Not available

Study Timeline

• Results First Posted: 1900-01-01
• Study Start: 2009-01-23
• Last Update Posted: 13 January 2020

Recruitment & Eligibility

• Status: Completed
• Sex: All
• Target Recruitment: 506

Inclusion Criteria

New diagnosis of epilepsy meeting International League Against Epilepsy (ILAE) diagnostic criteria;
Aged over 44 weeks post conception;
Residing within the Sydney South West Area Health Service (SSWAHS) Eastern Zone geographical boudaries for the past month.

Exclusion Criteria

Seizures due to acute cerebral insult or reversible metabolic courses.

Study & Design

• Study Type: Observational
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
Psychosocial factors: Family functioning assessed by The Family APGAR Score; perceptions and social support (from Quality of Life in Newly Diagnosed Epilepsy Instrument (NEWQoL)); Carer and patient psychological distress assessed by General Health Questionnaire (GHQ-12) and Hospital Anxiety and Depression Scale (HADS); Disability (World health organisation Disability Assessment Schedule (WHODAS-12)' Quality of Life (Visual Analogue Scale); Childhood behaviour (Childhood behabviour Checklist); Coping and Resilience (illness Perception Questionnaire).[Baseline; 4 months; 12 months.]

Secondary Outcome Measures

Name	Time	Method
Economic Hardship: will be measured as a dichotomous variable based on a series of questions about failure to make household payments and whether there was help provided by any organistation or individual. A family reporting one or more failures to make payments or the need for help in making payments will be identified as a case of economic hardship. This will be measured at baseline for the 3 months prior to the diagnosis of epilepsy and at each follow-up visit. An advantage of this measure is that it is sensitive to the possibility that individuals do prioritise certain payments (e.g. default on power bills to pay rent). The basis for these questions is the US Census Survey of Income and Program Participation.[Baseline; 4 months; 12 months.]