SUDEP Disclosure Discussions

"Studies report that families: 1) Want to be told about the risk of SUDEP by their healthcare providers; and 2) Believe that learning about SUDEP could make a difference in how they approach seizure control". Yet, despite the serious risk of SUDEP, health care providers are hesitant to discuss it.

RESOURCES THAT MAY HELP ENHANCE SUDEP DISCLOSURE DISCUSSIONS

USA - MATERIALS:

@childneurologyfoundation.org

[1]  Understanding Your Child’s Risk for SUDEP: Your Child’s Current Risk is Low, But it is Important to Stay Informed” (LOW RISK for SUDEP)

[2]  Understanding Your Child’s Risk for SUDEP: The Need to Have as Few Seizures as Possible” (HIGHER RISK for SUDEP)

[3] [  ]

USA - ELECTRONIC TOOLS:

[1]  The Child Neurology Foundation is working with Digital Health Solutions LLC and Greenwich Biociences Inc. to design and implement a high-tech tool, through Child Health Improvement through Computer Automation (CHICA)®. This project aims to automatically generate SUDEP risk screening during routine primary care visits.

REFERENCES:

[1]  Nashef, L (1997). Sudden unexpected death in epilepsy: terminology and definitions. Epilepsia 1997;38(Suppl 11):6-8.

[2]  Harden, C et al. (2017). Practice guideline summary: Sudden unexpected death in epilepsy incidence rates and risk factors. Neurology Apr 2017;88(17)1674-1680.

[3] Keller, AE et al. (2018). Incidence of sudden unexpected death in epilepsy in children is similar to adults. Neurology Jun 2018, 10.1212/ WNL.0000000000005762

Brochures: for download, in English/French/Spanish

Video: Purple Day's Cassidy Megan explains SUDEP

B/N: 822860052RR0001

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