Michelle Tall, MSN, PhD, recently completed her Nursing PhD at the University of Central Florida after developing and testing the Medilepsy app to help youths ages 16-24 transition from caregiver-managed to self-managed care. One of only two nurses awarded a McKnight Doctoral Fellowship for research in 2018, Tall was inspired to develop the app after many years of frustrating misdiagnoses for her son, Josh, who has a rare type of epilepsy.
In addition to reminder notifications to help adhere to their medication schedule, the app teaches self-management skills, and allows patients to set goals and earn personal rewards. The app also notifies caregivers if intervention is needed. Other features include medication side effects information, suggested questions to ask a doctor, and a private social platform to provide a sense of community.
Tall, a nurse since 1989, was inspired to pursue higher education in nursing because she saw that children with epilepsy were not well understood in the schools and the community.
“I also witnessed how stigmatized the disease was in modern-day times,” Tall said. “That lack of awareness and misinterpretations were two main drivers for me to start a non-profit, The Epilepsy Leadership Foundation Inc, in Maitland, and pursue a higher education. My goals are to advocate for youth living with epilepsy and their families and examine new interventions to help support self-management.”
Raising Josh posed many challenges. She had to stop working as a nurse because Josh needed full-time care. Josh was on a special diet for 18 months, which required weekly meal plans under major restrictions. They traveled to New York City six or more times a year for many years for medical treatment with an epileptologist.
“Josh's epilepsy did not respond favorably to many medications, so he underwent very involved treatments, but did not require surgery,” Tall said.
It was challenging to be treated differently at school, and hard for Josh to develop a social network.
“Even in modern days, many people do not fully understand that people who live with epilepsy have the same desires to have fun, learn, be a part of their community, and have a social life with a friend,” Tall said. “However, epilepsy is a highly stigmatized disease rooted in misperceptions and lack of awareness.”
Josh's syncope episodes began when he was six months old, but he was diagnosed with breath-holding spells. As we know now, the "breath holding spells" were highly suggestive of seizures- epilepsy was never mentioned. At seven, Josh was misdiagnosed again with benign epilepsy that did not require any medications.
Symptoms and seizures worsened, and he was hospitalized multiple times. After many interactions with specialists and no major improvement for almost two years, they took Josh to New York City for medical treatment at the NYU Comprehensive Epilepsy Center. At nine, he was diagnosed with a rare type of epilepsy. Tall and her husband, a spine surgeon, are grateful for the care he received there. A comprehensive medical treatment plan was initiated that has been successful. Josh has been seizure-free since September 2016, when he was 13. He is still being treated, but is currently weaning off his antiepileptic medications.
“Patients and families should know that out-of-state treatment at different tertiary centers will sometimes help pay for travel and lodging expenses,” Tall said. “Further, doctors out of state-listed as in-network providers are covered typically as in state and usually are not charged at an out-of-network rate.”
Josh was very fearful of hospitalizations, procedures, and doctors (rightfully so). His parents feared for his life every day. They felt alone, scared and confused despite both being healthcare professionals.
“We never gave up. And Josh never gave up even in his weakest/sickest moments and hospitalizations,” Tall said. “I would say that the feeling of giving up, feeling tired, and burnout are a reality for many families with a loved one with a chronic illness. And, yet, these families are among the most determined and kindhearted families I have ever met during our journey. The determination to help your child have the best medical and quality of life is an ongoing process with many moving parts unique to each individual and family.”
Tall said the right protocol is unique to the type of epilepsy a person has and the person's symptoms and response to treatment both physically and mentally.
“Josh's protocol was a slow and gradual process trialing different medications, special diets, and having many diagnostics and electroencephalogram (EEGs) studies,” Tall said. “The ‘right’ protocol essentially was a combination of meds, therapy, and tons of support to help Josh build self-confidence, including the involvement of tutors, teachers, family, friends, church, and healthcare providers to meet his physical, spiritual, and mental needs. This intensive process took many years, and I acknowledge the ‘village's support’ to make a difference in Josh's quality of life.”
Her idea to design a mobile app was multifactorial: 1) through personal experience as a parent navigating through a complex health care system with a son with complex medical needs, 2) stigma and misperceptions associated with epilepsy that can impact social and mental health, 3) years of researching complex issues regarding the lack of preparation for adolescents and young adults living with epilepsy to adhere to their treatment plans and transition from a pediatric health care model to an adult model of care.
“I prioritize self-management for patients and families into two areas: medication adherence and transition readiness skills,” Tall said.
Often when adolescents turn 18-21 years, they are considered adults and are expected to integrate into an adult health care system to manage their epilepsy confidently. For some, transfer of care can be very stressful because of the loss of a long-term relationship with a provider and anxiety about building a new relationship with a healthcare provider and establishing rapport and trust, which can be stressful.
Tall said it was essential for the app to also keep involved caretakers aware of their loved one's behaviors using the app to track things like medicine status.
As part of her dissertation, Tall did a four-week study to test the effect of the Medilepsy app on medication adherence for patients with epilepsy aged 16-24, with and without caregiver support.
“The study included patients and caregivers from 16 states and had promising results,” Tall said. “Participants showed significant improvement in appointment keeping and managing medications. Feedback from study participants was also positive. Participants especially liked the text messaging feature and overall reported Medilepsy as a reliable resource to support medication adherence and transition needs.”
Tall plans to release the app in the future once she has retained the resources to expand it. Her future plans are to apply for grant funding to build an interdisciplinary team to enhance the app to include Android users (version one only supports iPhone users) and expand testing internationally. She also plans to develop similar apps to help adolescents, young adults, and families self-manage other chronic conditions, such as autism, asthma, and diabetes, with the integration of artificial intelligence.
She estimates needing a minimum of $250,000 dollars to have a team and a comprehensive app that positively impacts lives.
You can help by donating to the Epilepsy Leadership Foundation, Inc., https://elfcares.org/