A question prompt list for sudden unexpected death in epilepsy

• Published in: Annals of the Child Neurology Society 2023-06, Vol.1 (2), p.144-148
• Main Authors: Bansal, Simran, Pallotto, Isabella K., Shellhaas, Renée A., Lapham, Gardiner, Stanton, Thomas, Grinspan, Zachary, Buchhalter, Jeffrey, Donner, Elizabeth J., Kelly Davis, J., Patel, Shital H., Lemmon, Monica E.
• Format: Article
• Language: English
• Subjects: Caregivers; Children & youth; Consortia; Convulsions & seizures; counseling; Disclosure; Editing; Empowerment; Epilepsy; Families & family life; Mortality; Neurology; Parents & parenting; Pediatrics; sudden unexpected death in epilepsy; SUDEP; Verbal communication; Writing
• ISSN: 2831-3267; 2831-3267
• DOI: 10.1002/cns3.20027

Introduction Sudden unexpected death in epilepsy (SUDEP) is a common cause of premature mortality in people with epilepsy.1 Professional guidelines and existing data from caregivers of children with epilepsy support SUDEP risk disclosure in the clinical setting. 1 Yet SUDEP risk disclosure remains a challenge for both clinicians and caregivers.2 Barriers to clinician risk disclosure may include fear of exacerbating caregiver anxiety, discomfort navigating complex communication, lack of knowledge, and limitations in SUDEP prevention strategies.2 Caregivers may be unsure of which questions to ask or feel hesitant voicing their questions.2 Question prompt lists (QPLs) have the potential to empower caregiver question-asking and decrease unmet informational needs about SUDEP.3 Methods In a prospective cross-sectional study, we consulted existing literature on SUDEP communication preferences to design a 24-question survey for caregivers of children with epilepsy.4 A stakeholder advisory committee comprised of caregivers, epileptologists, and advocates provided guidance on study design and survey content. Table 1 Child and Caregiver Characteristics All Caregivers (N = 212) Caregivers Who Submitted Questions (n = 119) Characteristic Median (Range) or n (%) Median (Range) or n (%) Caregiver Characteristics Age, y 42 (18-72) 42 (18-69) Race White 194 (91.5) 112 (94.1) Mixed 4 (1.9) 3 (2.5) Asian 2 (0.9) 0 Black or African American 1 (0.5) 1 (0.8) Prefer not to answer 5 (2.4) 2 (1.7) Not reported 6 (2.8) 1 (0.8) Ethnicity Non-Hispanic 186 (87.7) 108 (90.8) Hispanic 13 (6.1) 6 (5.0) Not reported 13 (6.1) 5 (4.2) Bereaved 12 (5.7) 9 (7.6) U.S. Resident 174 (82.1) 104 (87.4) Region of residence in U.S. Midwest 50/174 (28.7) 29/104 (27.9) South 50/174 (28.7) 31/104 (29.8) West 37/174 (21.3) 25/104 (24.0) Northeast 25/174 (14.4) 14/104 (13.5) Not reported 12/174 (6.9) 5/104 (4.8) Child Characteristics n = 181* n = 101* Age, y 10.5 (0-45) 12.0 (0-34) Number of seizures Per month 3 (1-100) 2 (1-100) Per year 24 (1-100) 15 (1-100) Presence of > 1 seizure per month 96 (53.0) 49 (48.5) Presence of tonic clonic seizures 106 (58.6) 65 (64.4) Number per year 4 (1-100) 4 (1-100) Presence of nocturnal seizures 123 (68.0) 71 (70.3) Tonic clonic 73 (40.3) 42 (41.6) Number of prescribed seizure medications 2 (0-6) 2 (0-5) Collation and categorization of caregiver responses resulted in the identification of 14 questions endorsed by caregivers (Figure 1). By empowering caregivers to thi