Authors :
Presenting Author: Kristina Simeone, PhD – Creighton University School of Medicine
Dawn Martenz, BS – Charlie Foundation; Shruthi Iyer, MS – Creighton University School of Medicine; Stephanie Matthews, MS – Creighton University School of Medicine; Elizabeth Donner, MD – Department of Paediatrics, Division of Neurology – Hospital for Sick Children; Samden Lhatoo, MD – Department of Neurology – University of Texas Health Science Center; Timothy Simeone, PhD – Associate Professor, Pharmacology and Neuroscience, Creighton University School of Medicine
Rationale:
The development of personalized SUDEP risk prediction tools requires the identification of additional biomarkers which may synergistically contribute to increased risk. Preclinical data report within subject modifiable biomarkers including sleep and cardiorespiratory changes, emerge weeks prior to SUDEP. Here, we bridge preclinical findings with future clinical/preclinical studies and survey whether caretakers or family members of victims noticed transient changes prior to SUDEP.
Methods:
A mobile electronic survey was posted on SUDEP community websites. The survey queried whether changes in seizures, sleep, physical well-being, emotional well-being, cognition, breathing, or heart rate were noticed before SUDEP.
Results:
Sixty-one respondents had a loved one die of SUDEP. Not all respondents answered every question.
A majority (85%) of the deceased had multiple transient comorbidities prior to SUDEP. Changes in seizures (28/54), and sleep problems (30/58) occurred in more than 50% of the deceased. Problems in physical well-being (25/57) were reported. Changes in emotional well-being (depression, anxiety, stress, agitation, aggression, and apathy) occurred in 26/56 of SUDEP victims. Changes were observed within the last two months of life in ~1/3 of the deceased, and more than four months prior to SUDEP in ~1/3 of the deceased, indicating a potential time frame for proactive preventative strategies. Respondents also noted changes in cognition (16/55), breathing (9/54) or heart rate (8/55). Data indicate these changes may be associated with increased SUDEP risk within subject. Study limitations include the responses were based on memory, and caretakers were not prompted to observe changes a priori, thus some existing changes may have gone unnoticed.Conclusions:
Data support the preclinical findings that transient, subclinical (i.e., not severe enough to require medical intervention), modifiable comorbidities may increase risk of SUDEP. Understanding whether different combinations of transient comorbidities are specific to epilepsy type, age, or sex needs to be determined to move the field forward in hopes of developing a personalized approach to develop preventative strategies.
Funding:
NIH NS111389 (KAS) and NIH NS126418 (TAS, KAS)