The First Seizure Clinic: psychosocial characteristics of patients and the effect of an epilepsy support program

Epilepsy is a lower prevalence, episodic condition with points of initiation or remission difficult to identify. Consequently, truly representative community research samples are rare. Reliance on data from specialist centres or support groups may give an inaccurate overview of psychosocial outcomes. This thesis has addressed issues of diagnosis and management of seizure patients through its examination of psychosocial characteristics of First Seizure Clinic patients at diagnosis and follow up over 12 months, and through its evaluation of a support program for a subgroup of these patients. Such early data provide a valuable baseline for gauging the longitudinal impact of seizures and their treatment on psychosocial well-being. The inclusion of all First Seizure Clinic patients regardless of diagnosis also allowed comparisons between patients with and without seizure-related diagnoses on wellbeing measures. The use of a randomized controlled trial (RCT) to evaluate the support service for seizure patients was an innovative feature of the research, as was an evaluation of the Liverpool Adverse Events Profile (LAEP), a measure for side-effects of antiepileptic drugs. The study cohort (N=245) had a mean age of 36.5 (±15.9) years with two thirds male. Thirty percent of participants received a non-seizure diagnosis. After categorization as seizure, epilepsy, syncope or other, there were no demographic differences between the categories. Measures of ill-being and well-being were generally aligned and did not differ between diagnostic categories. Over time, all diagnostic groups showed significant falls in past worry and future worry, however their levels of anxiety and depression were up to twice that of the Australian community. For the RCT, only seizure / epilepsy patients were included (N=167). There were no differences between the control and intervention groups over 12 months for the eight key quantitative variables, or for satisfaction with the clinic service. However, when asked about sources of health information, and in response to qualitative investigation, the intervention group rated the support worker as the most used source, and as highly valued. The LAEP evaluation found it to be more informative when used as a repeated measure of specific symptoms than as a global score. Even so the constructs assessed by LAEP were largely reflected in measures of anxiety and depression. Anxiety and depression were notable features of the First Seizure Clinic cohort regardless of diagnosis thereby raising the question of how best to identify and manage these conditions for all patients in such a setting. In seizure patients, the support program did not demonstrate positive effects on the key psychosocial outcomes, but likewise it did not indicate harm. Questioning of patients regarding their use and value of the service revealed a strong, positive response which, while encouraging, needs further exposition. These data and the methodology modelled provide a valuable basis for ongoing investigation of anxiety and depression associated with seizures. Given the strong relationship demonstrated between anxiety, depression and the reporting of antiepileptic drug (AED) effects, it also underscored the need to develop robust measures for assessing AED effects.