Abstracts

Seizure detection watch impacts quality of life of adolescents with epilepsy and their families

Abstract number : 3.356
Submission category : 11. Behavior/Neuropsychology/Language / 11B. Pediatrics
Year : 2017
Submission ID : 349855
Source : www.aesnet.org
Presentation date : 12/4/2017 12:57:36 PM
Published date : Nov 20, 2017, 11:02 AM

Authors :
Jennifer E. Langer, University of Virginia; Mary Thompson, MGH Institute of Health Professions; and Meheret Kinfe, University of Virginia

Rationale: Epilepsy is one of the most common neurological problems in adolescence. Adolescence is a challenging time as it is a period of great change, physically, emotionally, and socially.  Chronic diseases, like epilepsy, may make this transition more challenging by impacting normal developmental milestones.   Adolescents with epilepsy (AWE) have poor quality of life as defined by varying domains including psychological, social, and school performance.  There are many reasons why this may be, including the structural or neurochemical nature of epilepsy, seizures, treatments, coexistent mood and attentional problems, and the psychosocial impact of epilepsy on normal developmental milestones.In this study, we evaluated the impact of the SmartWatch detection and notification system (www.smart-monitor.com) on quality of life for AWE and family.  SmartWatch is a non­ invasive wristwatch that continuously monitors movements and alerts pre-determined family members/caregivers about movement concerning for seizure.  The device has been evaluated for accuracy in adult and pediatric patients for detecting generalized tonic-clonic seizures, with both high sensitivity and specificity.  We hypothesized that SmartWatch would improve quality of life for both AWE and his/her family member. Methods: In this prospective interventional study, 10 patients aged 14-21 years old meeting study criteria and an available family member/caregiver were prospectively enrolled in this study from 1/2015-12/2016.Inclusion criteria include diagnosis of epilepsy, history of generalized tonic clonic seizure (GTCS) with average frequency of 1 GTCS/3 months over the preceding 12 month period, current use anti-epileptic medications (AEDs), and have a willing parent/caregiver able to accompany the patient to each clinic study appointment.  Exclusion criteria included evidence of moderate to severe cognitive impairment, moderate to severe behavioral issues, known pregnancy, unwilling to comply with wearing of device, and history of psychogenic non-epileptic events.Study duration was 6 months and involved 3 study visits and a follow-up phone interview for the AWE and his/her family member.   At entry and study end, participants were administered Neuro-QOL short forms for stigma, anxiety, depression, and social relations along with QOLIE-AD-48.  The corresponding family member was administered the Parent Response to Child Illness (PRCI) Scale at entry and 6 month study end.   At study completion, the patient and family member received a phone call using a descriptive semi-structured qualitative interview to enquire about their experience with Smart Watch. Results: Statistically significant differences in overall measures of anxiety, depression, social relations, or quality of life in AWE or in parental responses to child illness were not detected using quantitative analysis of survey tools.However, preliminary qualitative findings based on phone interviews, suggest the SmartWatch is well received by both adolescents and parents. Participants who used the SmartWatch seizure detection device reported experiencing decreased seizure related anxiety.  AWE and caregiver reported an increased sense of security that promoted the achievement of developmentally appropriate tasks, such as increasing independence and attending college.  Data analysis is ongoing.  Conclusions: This is the first systematic study of the impact on quality of life of the SmartWatch detection and notification system.   Data suggests that SmartWatch is well received by AWE and parents and that study participants report positive experiences across multiple psychosocial domains. Funding: None
Behavior/Neuropsychology