Effectively Deploying Telemedicine to Care for Pediatric Neurology Patients During the COVID-19 Pandemic
Children’s Mercy Meets Clinical, Research and Educational Needs Virtually
Utilization of telemedicine before and during the pandemic
The Children’s Mercy Kansas City Neurology division provided more than 21,000 pediatric visits in 2019 for everything from epilepsy to pediatric stroke to Tourette syndrome. The division’s team includes more than 100 pediatric neurologists, advanced practice providers, nurses, therapists, imaging specialists, pharmacists, fellows and residents.As word spread that COVID-19 had reached U.S. shores in early 2020, the division’s team quickly began analyzing their capabilities, asking, “How can we provide our patients and their families with the complex medical and psychological care they’ve come to expect, without jeopardizing safety?”Under the leadership of Ahmed Abdelmoity, MD, FAAP, FAES, Director, Division of Neurology, the answer became clear: telemedicine.Prior to the pandemic, Neurology was one of the hospital’s divisions to more actively use telemedicine, but these appointments represented only 6% of its entire operation, while in-person visits represented the remaining 94%. Before COVID-19, patients who utilized telemedicine traveled to satellite clinics where a nurse facilitator helped conduct their exam using a telemedicine robot.With the infectious nature of COVID-19, it was important to rapidly transition to a model where the provider could communicate with the patient in their home. The team was concerned about social distancing, use of the limited supply of personal protective equipment and disease spread, especially for such a vulnerable patient population. All elective surgeries were postponed, except for neuromodulation procedures. Emergency surgeries continued on an as-needed basis.
Prioritizing patients for in-person versus telemedicine visits
Recognizing that in-person visits had to be reserved for only the most complex patients, the Neurology team developed a protocol to address a variety of patient scenarios. This allowed the team to assess each patient individually and assign them to the appropriate visit type. The decision matrix included:
After an initial telemedicine visit, some patients moved forward to an in-person visit due to a high level of anxiety, or a medical issue that required attention in the clinic. By April 2020, the division had shifted 90% of its patients to telemedicine appointments using the Teams application. A team (provider and nursing) also was assigned to address urgent calls, referrals and visits real time.
Patient and provider satisfaction with telemedicine
Admittedly, there was a learning curve with this new process, but as patients and the Neurology providers became more comfortable with it, the added value became apparent. Families liked the safety factor, but also appreciated the convenience of not having to take time away from work for appointments, or drive long distances to the hospital.
During COVID-19, the department monitored patient experience and quality of life metrics. The following questions were only asked of patients after implementation of telemedicine:
Providers were asked the following questions after implementation of telemedicine:
Research opportunities challenge telemedicine assumptions
Another important aspect of the Neurology division’s response to COVID-19 has been the opportunity to develop new research projects related to the pandemic. Led by Dr. Abdelmoity and Jean-Baptiste Le Pichon, MD, PhD, FAAP, Program Director, Neuroscience Research, Children’s Mercy has applied for a two-year, $1 million grant from the Agency for Healthcare Research and Quality called Team Up Against COVID (Telemedicine for Epilepsy to improve Access to care for Minors in Underserved Populations Against Coronavirus).
This research project challenges the assumption that telemedicine is insufficient to properly care for difficult-to-manage patients, such as those on the ketogenic diet.
The grant will evaluate the impacts of the COVID-19 pandemic on children and youth diagnosed with epilepsy in underserved populations, including minorities and low-income urban populations, and will determine the effectiveness of interventions based on telemedicine and increased family/provider engagement.
Aims for this research include identifying barriers to care for at-risk populations as a result of the pandemic; assessing the effectiveness of telemedicine for children and youth with epilepsy; and determining whether short, web-based instructional videos can improve engagement in families of children and youth with epilepsy.
React project assesses concerns regarding care during pandemic
Prior to the pandemic, the division had received funding for the Reaching Out for Epilepsy in Adolescents and Children through Telemedicine (REACT) project. The REACT project is funded by the Health Resources and Services Administration and is a collaboration with the American Academy of Pediatrics.
REACT seeks to increase access to quality, coordinated health care for children and youth with epilepsy, specifically for those residing in rural and medically underserved areas in the state of Kansas. REACT links pediatric epilepsy specialists with primary care providers (PCPs) in these communities, providing remote access through telemedicine technology for patient care and staff education/training.
Though Children’s Mercy had begun deploying REACT in these communities, COVID-19 slowed down implementation of the project. However, the division took advantage of the opportunity, initiating a survey assessing three cohorts of patients: Hispanic rural, non-Hispanic rural and Johnson County, Kansas, residents (a suburban area of Kansas City), to see how these three populations compared regarding changes during the pandemic, and how worried or affected they were about access to their child’s epilepsy care.
Key findings included:
1. Hispanic rural families were more worried about and affected by the pandemic than the other cohorts, followed by non-Hispanic families, then Johnson County residents. For Hispanic families that reported a loss of income, 50% were affected by not being able to pay for their child’s seizure medications, as opposed to 17% of non-Hispanic rural families and 33% of Johnson County families.
2. Regarding mental health and concern that their child with epilepsy was at higher risk for COVID-19, all families from all cohorts reported being worried to some degree. Fifty-six percent of Hispanic rural families were “very or extremely worried” about the risk, as compared to 33% of non-Hispanic rural families and 35% of Johnson County families.
3. With regard to access, again, Hispanic rural families worried at some level (67% for access to primary care provider and 50% for access to epilepsy specialist). However 50% of those were “very or extremely worried” about access to their PCP and 100% of those were worried about access to their epilepsy specialist.
Non-Hispanic rural families were worried at some level (43% for access to primary care and 57% for access to epilepsy specialist). However, 14% of those were “very or extremely worried” about access to their PCP and their epilepsy specialist.
Johnson County families were worried at some level (31% for access to PCP and 35% for access to epilepsy specialist). However, only 4% of those were “very or extremely worried” about access to their PCP and 8% of those were worried about access to their epilepsy specialist.
Utilizing virtual applications to improve educational engagement
An equally important challenge the Children’s Mercy Neurology division faced at the outset of the COVID-19 pandemic was how to safely meet residency and staff educational needs.
Rose Gelineau-Morel, MD, Assistant Program Director, Child Neurology Residency Program, led the transition to a virtual learning environment utilizing the Microsoft Teams application.
Within one week of beginning social distancing, the division began offering an average of four live virtual lectures each week. This was an increase from two weekly lectures prior to COVID-19. Lectures covered diverse topics, including quality improvement and leadership development in addition to clinical neurology, and were made available to all staff, both clinical and nonclinical.
By expanding these lectures to a larger audience and making them more accessible virtually, the division engaged more staff than possible through traditional, in-person educational lectures.
- Pre-COVID-19, an average of seven or eight people attended individual in-person lectures, with 28% of staff reporting they attended at least one lecture each week.
- During COVID-19, those numbers increased significantly, with an average of 22 participants at each lecture, and 79% reporting they attended at least one lecture each week.
- This increased participation continued to grow over time, with 87% of people reporting they attended at least one lecture per week after three months of virtual education.
- Nontraditional presenters also were invited to take part in virtual education, giving other staff members new educational opportunities.
The division also used Teams to store resources for subspecialties within neurology, such as neurometabolic, autoimmune, epilepsy, infectious disease and movement disorders, as well as board preparation materials for residents. Dr. Gelineau-Morel created a “Great Papers” folder, where she included recommended seminal publications, and she added a folder where staff could download and listen to lectures later. Residents created a Continuum Journal club, dividing topics for review and presenting them. Measuring satisfaction with virtual education was an important component of the initiative:
After three months of virtual education, 82.3% of survey respondents reported that they agreed or strongly agreed that virtual education helped them feel more connected to colleagues during this time, and 87.1% wished to continue virtual education.
“Even after we are past COVID-19, I think we will definitely continue some aspect of virtual education,” Dr. Gelineau-Morel said. “This was a great way to engage more people in our educational efforts and help staff feel more connected to one another. And as an organization, accessibility is key. We have providers at multiple locations who can’t always make it to an in-person lecture. Virtual education made it possible for us all to participate, no matter where we were.”
Children’s Mercy Kansas City is an independent, non-profit, 390-bed pediatric health system, providing over half a million patient encounters each year for children from across the country. Children’s Mercy is ranked by U.S. News & World Report in all ten specialties. We have received Magnet® recognition five times for excellence in nursing services. In affiliation with the University of Missouri-Kansas City, our faculty of nearly 800 pediatric specialists and researchers is actively involved in clinical care, pediatric research and educating the next generation of pediatricians and pediatric subspecialists. The Children’s Mercy Research Institute (CMRI) integrates research and clinical care with nationally recognized expertise in genomic medicine, precision therapeutics, population health, health care innovation and emerging infections. In 2021 the CMRI moved into a nine-story, 375,000-square-foot space emphasizing a translational approach to research in which clinicians and researchers work together to accelerate the pace of discovery that enhances care.