BOSTON - Boston Medical Center (BMC) has been awarded a three-year, $1.2 million grant from the Health Resources and Services Administration to expand access to high quality care for underserved populations of children and youth with epilepsy and related disorders. BMC's Comprehensive Epilepsy Center and Section of Pediatric Neurology will lead the 'Telehealth Epilepsy Care Collaborative,' a program that aims to reach a minimum of 1,000 children and youth up to age 24 with epilepsy through advanced telemedicine applications.
"We will be working with and training physicians from six community health centers (CHCs) - a total of 13 clinical sites across the state - to better identify signs of seizures in infants, children and adolescents," said Laurie Douglass, director of pediatric epilepsy at BMC and principal investigator of the grant. "BMC specialists will also help lead the entire diagnosis process by providing multidisciplinary assessments, coordinated treatment planning, seizure action plans, and transition plans for children enrolled in the program."
Children facing health disparities often have a high risk of unrecognized seizures and epilepsy. In a previously released ELGAN (The Extremely Low Gestational Age Newborn) study conducted by Dr. Douglass, a screening of 900 children at 10 years of age showed that a third had not been previously reported to have epilepsy. Nearly seventy-five percent of those with unrecognized epilepsy, or approximately 225 children, came from low-income and/or single parent families.
"The need to travel to a metropolitan area for a diagnosis or specialty care, like that required by epilepsy, can place an inordinate burden on patients and families, especially patients with disabilities and those of limited means," said Douglass, who is also an assistant professor of pediatrics and neurology at Boston University School of Medicine. "It's integral that we diagnose epilepsy early in children, as it's often accompanied by developmental, cognitive and behavioral comorbidities that affect the developing brain and can result in life-long disability."
By providing participating CHCs with a highly sensitive seizure screen platform to conduct initial screenings, developed in partnership with the technology company ACT.md, and by enhancing physicians' ability to better recognize signs of seizures, BMC will save parents a potentially long trip to a specialty clinic. If an initial screen shows signs of epilepsy, the CHC can refer patients to BMC specialists who will interview the family and conduct a second seizure screen via a HIPPA-compliant, secure web-based system. Patients with a positive second screen will be triaged for rapid evaluation and a comprehensive, multidisciplinary assessment at the Epilepsy Center within two weeks. For patients with negative screens, the epilepsy team and primary care provider will develop a triage plan to monitor, recommend additional diagnostic testing, and/or suggest an evaluation by a general child neurologist.
BMC specialists will work with the patients' CHC and primary care teams to design, implement and monitor mhealth (mobile health) care and seizure action plans that will be accessible through an enhanced virtual medical home within ACT.md. Telemedicine encounters, also using the ACT.md platform, will be an essential part of follow up care, eliminating the need for patients and families to travel back to BMC for pediatric neurology and other specialty care. Videoconferencing check-ins will allow families to discuss topics like new medications, possible side-effects of medications, and new symptoms with BMC specialists, and it enables physicians to see and help more patients, improving patient access and experience.
"Patients will leave BMC with an enhanced virtual medical home that can be shared with other family members, developmental or behavioral specialists, teachers, and during emergency room visits to better coordinate care," said Douglass.
Studies have shown that comprehensive telemedicine care plans for adults can decrease hospitalizations and improve patient satisfaction, and it is a proven method for expanding access to care (especially in remote areas) and potentially reducing the cost of care.
Another primary activity of the program is launching a 'Children and Youth with Epilepsy Quality Improvement Learning Collaborative' for physicians state-wide, which will meet monthly via web-based conferencing and be facilitated by BMC staff. Members of the learning collaborative will receive updates on best treatment practices for epilepsy, have access to a library of electronic learning materials, and participate in quality improvement efforts. They will also help develop a new transitional care framework for youth with epilepsy who are aging out of pediatric care.
The grant H98MC30371-01-01 was awarded by the Health Resources & Services Administration.