The Tasmanian Epilepsy Register – A Community-Based Cohort

D’Souza, Wendyl; Fryer, J. G.; Quinn, Stephen; Taylor, Bruce; Ficker, David M.; O’Brien, Terence J.; Pearce, Neil; Cook, Mark

doi:10.1159/000112859

Cited by 19 publications

(7 citation statements)

References 62 publications

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“…Besides two-stage methods and surveillance, three-stage method (field screening by neurologist, neurological evaluation at hospital, and EEG confirmation at hospital) and audit of epilepsy services were used. [ 27 28 29 ] Various sources of data like coded medical records,[ 30 ] national or regional registers,[ 31 ] general practice record,[ 32 ] indexed record filing system (medical records linkage system),[ 33 ] hospital records (inpatients, outpatients, and electroencephalography),[ 34 ] and prescription database[ 35 36 ] were used to identify the study population. In some studies, community sources like insurance and sickness funds have been used to measure disease prevalence (more often in the occupational groups).…”

Section: Epilepsy In Indiamentioning

confidence: 99%

Epilepsy in India I: Epidemiology and public health

Amudhan¹,

Gururaj²,

Satishchandra³

2015

Ann Indian Acad Neurol

128

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Of the 70 million persons with epilepsy (PWE) worldwide, nearly 12 million PWE are expected to reside in India; which contributes to nearly one-sixth of the global burden. This paper (first of the two part series) provides an in-depth understanding of the epidemiological aspects of epilepsy in India for developing effective public health prevention and control programs. The overall prevalence (3.0-11.9 per 1,000 population) and incidence (0.2-0.6 per 1,000 population per year) data from recent studies in India on general population are comparable to the rates of high-income countries (HICs) despite marked variations in population characteristics and study methodologies. There is a differential distribution of epilepsy among various sociodemographic and economic groups with higher rates reported for the male gender, rural population, and low socioeconomic status. A changing pattern in the age-specific occurrence of epilepsy with preponderance towards the older age group is noticed due to sociodemographic and epidemiological transition. Neuroinfections, neurocysticercosis (NCC), and neurotrauma along with birth injuries have emerged as major risk factors for secondary epilepsy. Despite its varied etiology (unknown and known), majority of the epilepsy are manageable in nature. This paper emphasizes the need for focused and targeted programs based on a life-course perspective and calls for a stronger public health approach based on equity for prevention, control, and management of epilepsy in India.

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Section: Epilepsy In Indiamentioning

confidence: 99%

Epilepsy in India I: Epidemiology and public health

Amudhan¹,

Gururaj²,

Satishchandra³

2015

Ann Indian Acad Neurol

128

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“…First, we acknowledge that the validity of case‐ascertainment of the TER cohort by AEDs is likely to be less than by door‐to‐door survey. However, high access to AED treatment in Australia, along with the large proportion of patients in this cohort treated exclusively by a general practitioner (D’Souza et al., 2007) greatly diminishes the selection bias present in previous smaller and tertiary care samples, suggesting that our findings should be more representative of community‐treated disease. Secondly, it is cross‐sectional; therefore, it is not possible to draw inferences about causation of the greater health service utilization by participants with higher psychological distress.…”

Section: Discussionmentioning

confidence: 94%

“…Socioeconomic status was obtained from the participants’ postcode using the Index of Relative Socio‐Economic Advantage/Disadvantage (SEIFA) 2001, developed by the Australian Bureau of Statistics. This study transformed SEIFA values into quintiles for the Tasmanian population as previously described in the TER methodology (D’Souza et al., 2007).…”

Section: Methodsmentioning

confidence: 99%

“…We utilized the Australian National prescription database to recruit patients in Tasmania who had been prescribed an antiepileptic drug (AED) for ''epilepsy or seizures'' to participate in the Tasmanian Epilepsy Register (TER, n = 1180), as previously described (D'Souza et al, 2007). Most of this cohort (70.9%) is exclusively treated by a general practitioner, suggesting that they are representative of community-treated disease.…”

Section: Methodsmentioning

confidence: 99%

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Psychiatric comorbidity and impact on health service utilization in a community sample of patients with epilepsy

et al. 2009

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Summary We aimed to determine the level of psychological distress in community‐treated patients with epilepsy and to determine if this distress is associated with increased health service use. The Australian National prescription database was used to recruit patients with epilepsy onto the Tasmanian Epilepsy Register (TER). Psychological distress was measured using the K10 in the TER patients and compared to the Tasmanian population using the National Health Survey 2004–5. Of the 1,180 on the TER, 43 withdrew, 36 died, and 262 were excluded. Of 839 patients, 652 completed the K10 (78%). High–very high levels of psychological distress were observed in patients with epilepsy compared with the general population [odds ratio (OR) 2.14, 95% confidence interval (CI) 1.79–2.56]. Patients with high–very high psychological distress had increased attendance at general practitioners (p < 0.001), specialists (p = 0.02), and emergency departments (p = 0.004). Psychological distress is increased in community‐treated patients with epilepsy compared to the general population, and is associated with increased health service use.

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“…The best available estimates based on a cross sectional survey in Tasmania and a study conducted 30 years ago suggest that it is prevalent in between 6 and 7.5 per 1000 people [1,2]. This equates to approximately 150,000 people in Australia presently living with this condition making it one of the 50 leading causes of disease burden and injury in the country [3].…”

Section: Introductionmentioning

confidence: 99%

Sydney epilepsy incidence study to measure illness consequences: the SESIMIC observational epilepsy study protocol

et al. 2011

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BackgroundEpilepsy affects an estimated 50 million people and accounts for approximately 1% of days lost to ill health globally, making it one of the most common, serious neurological disorders. While there are abundant global data on epilepsy incidence, prevalence and treatment, there is a paucity of Australian incidence data. There is also a general lack of information on the psychosocial impact and socioeconomic consequences of a new diagnosis of epilepsy on an individual, their family, household, and community which are often specific to the health and social system of each country.Methods/DesignThe Sydney Epilepsy Incidence Study to Measure Illness Consequences (SEISMIC) is an Australian population-based epilepsy incidence and outcome study that will recruit every newly diagnosed case of epilepsy in the Sydney South West Area Health Service to an epilepsy register. Multiple and overlapping sources of notification will be used to identify all new cases of epilepsy over a 24 month period in the Eastern Zone of the Sydney South West Area Health Service (SSWAHS) and follow up will occur over 12 months. SEISMIC will use the International League Against Epilepsy (ILAE) definitions and classifications for epidemiologic studies of epilepsy. The study will examine outcomes including mood, quality of life, employment, education performance, driving status, marital and social problems, medication use, health care usage, costs and stigma.DiscussionThis study is designed to examine how clinical, psychological factors, socioeconomic circumstances, and healthcare delivery influence the experience of epilepsy for individuals and families allowing better targeting of specific services and informing policy makers and practitioners. In addition, the study will provide the basis for a longitudinal population-based cohort study and potentially inform qualitative sub-studies and randomised controlled trials of intervention strategies. The study has been registered on the Australia New Zealand Clinical Trial Registration database with ANZCTRN12609000059268.

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The Tasmanian Epilepsy Register – A Community-Based Cohort

Cited by 19 publications

References 62 publications

Epilepsy in India I: Epidemiology and public health

Epilepsy in India I: Epidemiology and public health

Psychiatric comorbidity and impact on health service utilization in a community sample of patients with epilepsy

Sydney epilepsy incidence study to measure illness consequences: the SESIMIC observational epilepsy study protocol

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