Communication about sudden unexpected death in epilepsy: Understanding the caregiver perspective Article Swipe
Isabella K. Pallotto
,
Reneé A. Shellhaas
,
Kayli Maney
,
Madelyn Milazzo
,
Zachary M. Grinspan
,
Jeffrey Buchhalter
,
Elizabeth Donner
,
Gardiner Lapham
,
Thomas H. Stanton
,
J. Kelly Davis
,
Monica E. Lemmon
·
YOU?
·
· 2023
· Open Access
·
· DOI: https://doi.org/10.1002/cns3.7
YOU?
·
· 2023
· Open Access
·
· DOI: https://doi.org/10.1002/cns3.7
Objective We aimed to characterize (1) the caregiver experience of learning about sudden unexpected death in epilepsy (SUDEP), and (2) caregiver preferences for SUDEP risk disclosure. Methods We distributed a 24‐question survey to caregivers of children with epilepsy. Free text questions were analyzed using a rapid qualitative analysis approach. Results Two hundred and twelve caregivers of people with epilepsy completed the survey, including 12 bereaved caregivers. Caregivers' children had a high seizure burden, with a median seizure frequency of 24 seizures per year (range: 1 to ≥100). Most participants were aware of SUDEP at the time of the survey (193/212; 91%) though only a minority had learned about SUDEP from a healthcare provider (91/193; 47.2%). Caregivers typically learned about SUDEP from a nonprofit or online source (91/161; 56.5%). Almost all caregivers wanted to discuss SUDEP with their child's healthcare provider (209/212; 98.6%), and preferred disclosure from epileptologists (193/212; 91%), neurologists (191/212; 90.1%), and/or primary care providers (98/212; 46.2%). In open‐ended responses, caregivers highlighted the value of learning about SUDEP from a healthcare provider, the importance of pairing SUDEP risk disclosure with a discussion of how to mitigate risk, and the need for educational resources and peer support. Interpretation Caregivers of people with epilepsy appreciate when healthcare providers disclose information about SUDEP, yet typically hear about SUDEP elsewhere. These findings underscore the importance of interventions to improve and support SUDEP risk disclosure. Future work should evaluate strategies to disclose SUDEP risk and the impact of early SUDEP risk disclosure.
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Metadata
- Type
- article
- Language
- en
- Landing Page
- https://doi.org/10.1002/cns3.7
- https://onlinelibrary.wiley.com/doi/pdfdirect/10.1002/cns3.7
- OA Status
- diamond
- Cited By
- 5
- References
- 41
- Related Works
- 10
- OpenAlex ID
- https://openalex.org/W4316658075
All OpenAlex metadata
Raw OpenAlex JSON
- OpenAlex ID
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https://openalex.org/W4316658075Canonical identifier for this work in OpenAlex
- DOI
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https://doi.org/10.1002/cns3.7Digital Object Identifier
- Title
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Communication about sudden unexpected death in epilepsy: Understanding the caregiver perspectiveWork title
- Type
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articleOpenAlex work type
- Language
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enPrimary language
- Publication year
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2023Year of publication
- Publication date
-
2023-01-16Full publication date if available
- Authors
-
Isabella K. Pallotto, Reneé A. Shellhaas, Kayli Maney, Madelyn Milazzo, Zachary M. Grinspan, Jeffrey Buchhalter, Elizabeth Donner, Gardiner Lapham, Thomas H. Stanton, J. Kelly Davis, Monica E. LemmonList of authors in order
- Landing page
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https://doi.org/10.1002/cns3.7Publisher landing page
- PDF URL
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https://onlinelibrary.wiley.com/doi/pdfdirect/10.1002/cns3.7Direct link to full text PDF
- Open access
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YesWhether a free full text is available
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diamondOpen access status per OpenAlex
- OA URL
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https://onlinelibrary.wiley.com/doi/pdfdirect/10.1002/cns3.7Direct OA link when available
- Concepts
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Epilepsy, Psychological intervention, Medicine, Health care, Perspective (graphical), Psychiatry, Family medicine, Psychology, Economic growth, Computer science, Economics, Artificial intelligenceTop concepts (fields/topics) attached by OpenAlex
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5Total citation count in OpenAlex
- Citations by year (recent)
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2025: 2, 2024: 1, 2023: 2Per-year citation counts (last 5 years)
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41Number of works referenced by this work
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10Other works algorithmically related by OpenAlex
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