Authors :
Presenting Author: Danielle Andrade, MD – University of Toronto
Laurie Bailey, BCPA – UCB, Inc.; Mary Anne Meskis, Executive Director – Dravet Syndrome Foundation; Veronica Hood, PhD – Dravet Syndrome Foundation; Sophie Ferreira, MEd – Dravet Syndrome Foundation; Tracy Dixon-Salazar, PhD – LGS Foundation; Jennifer Griffin, Director of Family Support – LGS Foundation; M. Scott Perry, MD – Cook Children’s Medical Center; Fábio Nascimento, MD – Washington University School of Medicine
Rationale:
Developmental and epileptic encephalopathies (DEE) are characterized by multiple, refractory seizure types, electroencephalogram abnormalities, and cognitive disability. Long-term care planning for people with DEE entering adulthood is complicated by significant care requirements. The aim of this study is to provide a caregivers’ view of managing adulthood in people with DEE.Methods:
Members (≥18 years of age) of families with a child diagnosed with a DEE participated in an Institutional Review Board approved, anonymous internet-based survey to assess the resources required and needs of DEE families and the status of caregivers’ long-term care planning.Results:
Our analyses included 135 caregivers to 135 patients (median age: 16 years, Q1-Q3: 10-22 years). Of the caregivers, 121 (88.9%) were a parent and/or guardian, and 14 (9.6%) were adult (≥18 years of age) siblings. Most respondents reported supporting their loved one with daily living activities, including dressing (n=125, 92.6%), bathing (n=109, 80.7%), feeding (n=101, 74.8%), walking (n=88, 65.2%), and toileting (n=70, 51.9%), with 81.5% requiring constant safety monitoring.
Patients saw an average of 6.4 (SD:3.0) specialists. Neurologists (n=116, 85.9%) were seen the most, followed by pediatricians (n=86, 63.7%), epileptologists (n=69, 51.1%), speech therapists (n=67, 49.6%), and physical therapists (n=66, 48.9%).
Many parent caregivers had not started planning for future medical, legal, and financial care. Of these, 48.6% were caregivers of patients >18years. Twenty-two out of 121 (18.2%) parent caregivers had completed pediatric to adult care planning. Of the 14 adult siblings, 13 (92.9%) had made plans to receive transfer of future care of their DEE sibling and 32 (26.4%) parent caregivers had made plans to transfer future primary care to the patient’s sibling. Only 30 (22.2%) caregivers felt they had adequate access to long-term care planning information, 72 (53.3%) did not have the information available, and 33 (24.4%) were unsure.
Most caregivers (n=110, 81.5%) cited disease specific patient organizations as a means of obtaining support. Community based communications (other patients and/or caregivers [n=92, 68.1%] and social media [n=73, 54.1%]) were also cited as sources of information. Freeform responses included frustration in finding support and resources for patients with DEE, and concern about how patients and their caregivers will be supported as they transition into adulthood.Conclusions:
Caregivers of people with DEE are often family members, including adult siblings. However, no DEE family support programs or resources currently exist for long-term adult care planning or for the transfer of primary care. Our analysis indicates that caregivers and families may benefit from receiving additional support to facilitate future planning including the transition to adult care, particularly, future medical, legal, and financial care.
Funding:
UCB, Inc.