Avoiding premature death in epilepsy

Ridsdale, Leone

doi:10.1136/bmj.h718

Cited by 21 publications

(15 citation statements)

References 11 publications

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“…Many specialists work in isolation, with insufficient multi-disciplinary team support to address mental health issues, even if they are identified. If mental health issues are not redressed, there is likely over time to be a vicious cycle of negative consequences [3–5]. This requires exploration with longitudinal research, and development and testing of interventions to redress the gap.…”

Section: Discussionmentioning

confidence: 99%

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Characteristics associated with quality of life among people with drug-resistant epilepsy

Ridsdale¹,

Wojewodka²,

Robinson

et al. 2017

J Neurol

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Quality of Life (QoL) is the preferred outcome in non-pharmacological trials, but there is little UK population evidence of QoL in epilepsy. In advance of evaluating an epilepsy self-management course we aimed to describe, among UK participants, what clinical and psycho-social characteristics are associated with QoL. We recruited 404 adults attending specialist clinics, with at least two seizures in the prior year and measured their self-reported seizure frequency, co-morbidity, psychological distress, social characteristics, including self-mastery and stigma, and epilepsy-specific QoL (QOLIE-31-P). Mean age was 42 years, 54% were female, and 75% white. Median time since diagnosis was 18 years, and 69% experienced ≥10 seizures in the prior year. Nearly half (46%) reported additional medical or psychiatric conditions, 54% reported current anxiety and 28% reported current depression symptoms at borderline or case level, with 63% reporting felt stigma. While a maximum QOLIE-31-P score is 100, participants’ mean score was 66, with a wide range (25–99). In order of large to small magnitude: depression, low self-mastery, anxiety, felt stigma, a history of medical and psychiatric comorbidity, low self-reported medication adherence, and greater seizure frequency were associated with low QOLIE-31-P scores. Despite specialist care, UK people with epilepsy and persistent seizures experience low QoL. If QoL is the main outcome in epilepsy trials, developing and evaluating ways to reduce psychological and social disadvantage are likely to be of primary importance. Educational courses may not change QoL, but be one component supporting self-management for people with long-term conditions, like epilepsy.

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Section: Discussionmentioning

confidence: 99%

“…Long-term persisting seizures expose PWE to further risk of psychological and social disadvantage, as well as to premature death [3–5]. Barriers to seizure control include: severe brain pathology, psychological co-morbidity [6], social disadvantage [7, 8], and lack of provision of self-management advice and support [9].…”

Section: Introductionmentioning

confidence: 99%

Characteristics associated with quality of life among people with drug-resistant epilepsy

Ridsdale¹,

Wojewodka²,

Robinson

et al. 2017

J Neurol

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“…A brief symptom questionnaire could help to identify psychological comorbidity in routine care. This is important as depression is associated with poor drug‐adherence, poor epilepsy control, and risk of premature death …”

Section: Discussionmentioning

confidence: 99%

“…Despite the use of drugs, about 40% of people with epilepsy (PWE) report recurring seizures . Recurring seizures increase the risk of injury, hospital admission, depression, and death . Seizure control depends on appropriate medication and, as in other long‐term conditions, on self‐management .…”

Section: Introductionmentioning

confidence: 99%

The effectiveness of a group self‐management education course for adults with poorly controlled epilepsy, SMILE (UK): A randomized controlled trial

et al. 2018

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SummaryObjectiveEpilepsy is one of the most common neurological conditions affecting about 1% of adults. Up to 40% of people with epilepsy (PWE) report recurring seizures while on medication. And optimal functioning requires good self‐management. Our objective was to evaluate a group self‐management education courses for people with epilepsy and drug‐resistant seizures by means of a multicenter, pragmatic, parallel group, randomized controlled trial.MethodsWe recruited adults with epilepsy, having ≥2 seizures in the prior 12 months, from specialist clinics. Consenting participants were randomized 1:1 to a group course or treatment as usual. The primary outcome measure was quality of life 12 months after randomization using Quality of Life 31‐P (QOLIE‐31‐P). Secondary outcome measures were seizure frequency and recency, psychological distress, impact and stigma of epilepsy, self‐mastery, medication adherence, and adverse effects. Analysis of outcomes followed the intention‐to‐treat principle using mixed‐effects regression models.ResultsWe enrolled 404 participants (intervention: n = 205, control: n = 199) with 331 (82%) completing 12‐month follow‐up (intervention: n = 163, control: n = 168). Mean age was 41.7 years, ranging from 16 to 85, 54% were female and 75% were white. From the intervention arm, 73.7% attended all or some of the course. At 12‐month follow‐up, there were no statistically significant differences between trial arms in QOLIE‐31‐P (intervention mean: 67.4, standard deviation [SD]: 13.5; control mean: 69.5, SD 14.8) or in secondary outcome measures.SignificanceThis is the first pragmatic trial of group education for people with poorly controlled epilepsy. Recruitment, course attendance, and follow‐up rates were higher than expected. The results show that the primary outcome and quality of life did not differ between the trial arms after 12 months. We found a high prevalence of felt‐stigma and psychological distress in this group of people with drug‐resistant seizures. To address this, social and psychological interventions require evaluation, and may be necessary before or alongside self‐management‐education courses.

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“…[14][15][16] epsmon: a digitalised moBile app It lends itself to a variety of templates such as paper A4 sheets, Microsoft Excel ® spreadsheets to monitor risk longitudinally, telehealth services, and has been developed into a patient self-monitoring mobile app: EpSMon. EpSMon looks to incorporate key evidence-based risk factors with a view to empowering service users to monitor their own risk and has been launched as a patient self-monitoring mobile app for adults in association with Plymouth University and SUDEP Action.…”

Section: Feedback On Checklist In Routine Practicementioning

confidence: 99%

Can technology help reduce risk of harm in patients with epilepsy?

et al. 2015

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epilepsy mortality and clinical governance Sudden unexpected death in epilepsy (SUDEP) is possibly the most common cause of death as a result of complications from epilepsy, accounting for between 7.5% to 17% of all epilepsy-related deaths 1 and 50% of all deaths in refractory epilepsy.2 The UK has 600 000 people with epilepsy (PWE), 30% being treatment resistant. Sudden death is 20-fold higher in PWE than the general population. Epilepsy is the fifth highest cause of life-years lost in men and eighth in women in the UK. The public health burden of SUDEP alone is estimated as second only to stroke among neurological conditions. 3 Forty-two per cent of all deaths are considered avoidable.

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Avoiding premature death in epilepsy

Cited by 21 publications

References 11 publications

Characteristics associated with quality of life among people with drug-resistant epilepsy

Characteristics associated with quality of life among people with drug-resistant epilepsy

The effectiveness of a group self‐management education course for adults with poorly controlled epilepsy, SMILE (UK): A randomized controlled trial

Can technology help reduce risk of harm in patients with epilepsy?

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