Would people living with epilepsy benefit from palliative care?

Kluger, Benzi M.; Drees, Cornelia; Wodushek, Thomas R.; Frey, Lauren C.; Strom, Laura; Brown, Mesha-Gay; Bainbridge, Jacquelyn; Fischer, Sarah; Shrestha, Archana; Spitz, Mark C.

doi:10.1016/j.yebeh.2020.107618

Cited by 7 publications

(12 citation statements)

References 155 publications

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“…Future work will expand concepts of seizure severity to other datasets of ambulatory EEG with constrained spatial sampling. As the number of treatment options for drug-resistant epilepsy grows [7,62], new metrics are critical to evaluate epilepsy burden following medication administration, neuromodulation, and neurosurgery. By proposing a novel, quantitative metric for seizure severity, we seek to provide an objective measure of seizure burden to improve clinical care for people with epilepsy.…”

Section: Discussionmentioning

confidence: 99%

The seizure severity score: a quantitative tool for comparing seizures and their response to therapy

Pattnaik,

Ghosn,

Ong

et al. 2023

J. Neural Eng.

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Objective: Epilepsy is a neurological disorder characterized by recurrent seizures which vary widely in severity, from clinically silent to prolonged convulsions. Measuring severity is crucial for guiding therapy, particularly when complete control is not possible. Seizure diaries, the current standard for guiding therapy, are insensitive to the duration of events or the propagation of seizure activity across the brain. We present a quantitative seizure severity score that incorporates EEG and clinical data and demonstrate how it can guide epilepsy therapies.Approach: We collected intracranial EEG and clinical semiology data from 54 epilepsy patients who had 256 seizures during invasive, in-hospital presurgical evaluation. We applied an absolute slope algorithm to EEG recordings to identify seizing channels. From this data, we developed a seizure severity score that combines seizure duration, spread, and semiology using non-negative matrix factorization. For validation, we assessed its correlation with independent measures of epilepsy burden: seizure types, epilepsy duration, a pharmacokinetic model of medication load, and response to epilepsy surgery. We investigated the association between the seizure severity score and pre-ictal network features.Main results: The seizure severity score augmented clinical classification by objectively delineating seizure duration and spread from recordings in available electrodes. Lower preictal medication loads were associated with higher seizure severity scores (p = 0.018, 97.5% CI = [-1.242, -0.116]) and lower pre-surgical severity was associated with better surgical outcome (p = 0.042). In 85% of patients with multiple seizure types, greater preictal change from baseline was associated with higher severity.Significance: We present a quantitative measure of seizure severity that includes EEG and clinical features, validated on gold standard in-patient recordings. We provide a framework for extending our tool’s utility to ambulatory EEG devices, for linking it to seizure semiology measured by wearable sensors, and as a tool to advance data-driven epilepsy care.

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Section: Discussionmentioning

confidence: 99%

The seizure severity score: a quantitative tool for comparing seizures and their response to therapy

Pattnaik,

Ghosn,

Ong

et al. 2023

J. Neural Eng.

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“…Finally, we propose a preictal iEEG network measure that associates with seizure severity. As the number of palliative measures for drug-resistant epilepsy grows 7,49 , new metrics are critical to evaluate epilepsy burden following medication administration, neuromodulation, and neurosurgery. By proposing a novel, quantitative metric for seizure severity, we seek provide an objective measure for epilepsy burden and improve clinical care for people with epilepsy.…”

Section: Discussionmentioning

confidence: 99%

A quantitative tool for seizure severity: diagnostic and therapeutic applications

Pattnaik

Ghosn

Ong

et al. 2022

Preprint

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Objective: More than one-third of the people with focal epilepsy do not achieve seizure freedom with medication, neuromodulation, or neurosurgery therapies. Palliative care with the goal of reducing epilepsy burden is an alternative for these patients. Minimizing severe seizures is essential for reducing morbidity. Existing seizure severity scales are qualitative and rely on patient reports, limiting our ability to rigorously track and intervene to curb severe seizures. The goal of this study is to develop and validate a quantitative metric for seizure severity. Methods: We retrospectively analyzed preictal and ictal intracranial-EEG (iEEG) recordings from 54 people with drug-resistant epilepsy undergoing pre-surgical evaluation. We developed a new metric that objectively combines seizure duration, spread, and semiology to quantify seizure severity. We calculated preictal iEEG network features and fit a linear mixed-effects model to quantify patient-specific associations between preictal networks and seizure severity. Results: We evaluated 256 seizures from 54 patients using the quantitative seizure severity score. Seizure severity was consistent with clinical seizure type. Medication taper strategy was associated with seizure severity (p = 0.018, 97.5% confidence interval = [-1.242, -0.116]) and lower pre-surgical seizure severity was associated with better post-surgical seizure outcome (U = 465, p = 0.042). A linear mixed-effects model with preictal network features as regressors and seizure severity as response revealed a group-level positive trend. In 12 out of 14 patients with multiple types of seizures, more severe seizures were preceded by more abnormal preictal networks. Significance: We present a quantitative metric for seizure severity that correlates with clinical and electrographic features. We found that the seizure severity score was associated with abnormal preictal networks. We propose this measure to holistically capture patient condition and guide incremental changes in therapy to improve patient outcome over time.

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“…Nine articles referred to one or more integrated care components that had been implemented [16][17][18][19][20][21][22][23][24], and 12 articles recommended one or more integrated care components [6,[25][26][27][28][29][30][31][32][33][34][35].…”

Section: Integrated Care Components and Modelsmentioning

confidence: 99%

“…Multidisciplinary teams (MDTs): Twenty-two articles (61%) assessed the role and importance of MDTs in maximising the effectiveness and continuity of care for PLWE, but there was no consistency on the HCPs included in the MDT. Most of these articles (n = 13) recommended approaches to MDT organisation to foster optimal care for PLWE across various care settings [6,25,26,28,30,[33][34][35][36][37][38][39][40]. The remaining articles reported on the role of MDTs within other components of integrated care (e.g., care coordination) or models of integrated care that have been implemented [22,23,[41][42][43][44][45][46][47].…”

Section: Healthcare Staff and Pathwaysmentioning

confidence: 99%

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Integrated Care in Epilepsy Management: A Scoping Review of the Models and Components of Health and Social Care Delivery

Spanos,

Hutchinson,

Ryder

et al. 2024

International Journal of Integrated Care

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Introduction: Epilepsy is the most common neurological condition globally. Integrating health and social care is fundamental in epilepsy management, but the scope of progress in this area is unclear. This scoping review aimed to capture the range and type of integrated care components and models in epilepsy management.Methods: Four databases were searched for articles published since 2010 that reported on integrated care in epilepsy. Data were extracted and synthesised into components of integrated care that had been implemented or recommended only. Models of integrated care were identified, and their components tabulated.Results: Fifteen common and interrelated components of integrated care emerged that were aligned with four broad areas: healthcare staff and pathways (e.g., epilepsy nurses); tasks and services (e.g., care coordination); education and engagement (e.g., shared decision making); and technology for diagnosis and communication (e.g., telehealth). Twelve models of integrated care were identified; seven were implemented and five were recommended.Discussion: There is a growing evidence-base supporting integrated, person-centred epilepsy care, but implementation is challenged by entrenched silos, underdeveloped pathways for care, and deficits in epilepsy education. Conclusion:Integrating epilepsy care relies on changes to workforce development and policy frameworks to support whole-of-system vision for improving care.

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Would people living with epilepsy benefit from palliative care?

Cited by 7 publications

References 155 publications

The seizure severity score: a quantitative tool for comparing seizures and their response to therapy

The seizure severity score: a quantitative tool for comparing seizures and their response to therapy

A quantitative tool for seizure severity: diagnostic and therapeutic applications

Integrated Care in Epilepsy Management: A Scoping Review of the Models and Components of Health and Social Care Delivery

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