Telehealth

nurse checking boy's hearbeat

Children’s National launches telehealth collaboration with Whittle School & Studios

nurse checking boy's hearbeat

The School-Based Telehealth Program provides students quick access to medical care, rapid diagnosis of medical conditions, and better management of chronic conditions like asthma and diabetes, while minimizing time away from school for children – and from work for parents.

Children’s National Hospital and Whittle School & Studios announced a collaboration to provide students at the Whittle School’s D.C. campus with on-site video connectivity to health professionals at the hospital throughout the 2019-20 school year.

“We are thrilled to collaborate with Children’s National to offer our students world-class medical care from compassionate providers,” said Dennis Bisgaard, head of Whittle’s D.C. campus. “The health and safety of our students is our top priority, and this new collaboration ensures that they’ll be in excellent hands.”

A registered nurse from Children’s National will work on-site at Whittle’s D.C. campus to provide acute care, first aid, immunization record-keeping, medication management, EpiPen storage and training and more.

Children’s National’s School-Based Telehealth Program will also be available at the Whittle School. The on-site nurse will have the ability to use secure video-conferencing technology to connect students with board-certified physicians from Children’s National, if necessary.

The School-Based Telehealth Program provides students quick access to medical care, rapid diagnosis of medical conditions, and better management of chronic conditions like asthma and diabetes, while minimizing time away from school for children – and from work for parents. The program will complement existing care the student may already receive from their medical home or primary care provider.

“We are excited to collaborate with the Whittle School to design a program centered on our shared vision of helping children,” said Denice Cora-Bramble, M.D., executive vice president and chief medical officer, ambulatory and community health services at Children’s National. “Our goal is that this new collaboration will provide access to highly-specialized health care expertise to patients and families and our hope is that school-based nursing services, coupled with telehealth technology, will improve students’ health and education outcomes.”

Dr. Natasha Shur shares “Genetics and Telemedicine: Extending Our Reach” at the Future of Pediatrics CME

Virtual visits: A new house call for rare disease treatment

Dr. Natasha Shur shares “Genetics and Telemedicine: Extending Our Reach” at the Future of Pediatrics CME

Natasha Shur, M.D., an attending clinical geneticist at Children’s National Health System, shares “Genetics and Telemedicine: Extending Our Reach” at the Future of Pediatrics CME symposium in Bethesda, Maryland, on June 20.

“For the first time it wasn’t autism, autism, autism,” Shannon Chin says after learning the reason her newborn daughter, Sariyah, who turned 3 in August, couldn’t feed like normal infants was due to a tiny deletion of chromosome 22. This atypical deletion, a variation of a genetic condition known as 22q11.2 deletion syndrome, left Sariyah unable to suck and obtain nourishment as an infant. She was born premature and relied on assisted feeding tubes, inserted through her nose, to help her grow.

At 22-weeks-old, Sariyah received the diagnosis, which affects 1 in 4,000 children born each year. Sariyah’s genetic tests encouraged Chin to follow up with a nagging question: What if her two sons, Rueben and Caleb, both of whom were diagnosed with autism spectrum disorder (ASD), had something else?

Debra Regier, M.D., a medical geneticist at Children’s National Health System, encouraged Chin to follow up with a genetic test to answer these questions and to confirm 22q11.2 deletion syndrome symptoms she observed in Rueben.

A microarray analysis recently revealed Rueben, 17, has atypical  22q11.2 deletion syndrome. Caleb, 5, took the test and has developmental delay and ASD, which is more likely to occur in children with 22q11.2 deletion syndrome. He tested negative for the same deletion as his siblings. Additional tests are underway.

As Chin juggles complex care for her children, she realizes the partial deletion of chromosome 22 presents differently in every child. Sariyah and Rueben share short stature; they fit into tiny clothes. That’s where the phenotypical clues stop. They don’t have a cleft palate or dysmorphic facial features, distinctive of typical cases of 22q11.2 deletion syndrome. Sariyah has physical symptoms. Her intestines merged together, which gastrointestinal surgery fixed. Rueben experiences behavioral and neurological symptoms, including picky eating, aggression and uncontrolled body movements, which led the Chin family to Dr. Regier. Sariyah, Rueben and Caleb all have neurodevelopmental delays that impact their speech and development.

Coordinating multiple visits with geneticists, specialists, surgeons, genetic counselors and pediatricians, while navigating insurance, is a lot for any parent, but especially for those, like Chin, who have special considerations. Her children are non-verbal, so she pays close attention to their physical cues. Simplifying this process is one reason why Natasha Shur, M.D., a medical geneticist at Children’s National, introduced virtual visits to her patients, including Rueben, who had challenges with in-person visits. She thought: How can we make medical care easier for patients and families?

In January, Dr. Shur expanded virtual visits into a pilot program for 50 to 60 patients, including Sariyah and Caleb, with the support of a grant from the Health Resources and Services Administration (HRSA), the division of telemedicine at Children’s National and the Rare Disease Institute (RDI), the medical home to thousands of pediatric patients living with rare or genetic conditions. This program lets patients with concern for or already diagnosed genetic conditions in Maryland, the District of Columbia and Virginia, where Dr. Shur is licensed to practice medicine, test out virtual visits. Patients can download the HIPAA-compliant app or click through a secure link on a digital device to connect with Dr. Shur or a pediatric subspecialist.

Dr. Shur shares the preliminary findings of a new virtual visits pilot program,

Dr. Shur shares the preliminary findings of a virtual visits pilot program, which 50-60 local patients have tested in conjunction with in-person visits as a flexible way to manage medical care for genetic conditions.

On June 20, Dr. Shur shared a presentation about the program, “Genetics and Telemedicine: Extending Our Reach,” with pediatricians attending the Children’s National Future of Pediatrics continuing medical education (CME) symposium in Bethesda, Maryland.

Instead of a formal pilot program launch and end date with data, Dr. Shur mentions she conducts quality improvement assessments with each patient. She asks what they like about virtual visits. Do they feel comfortable with the software and technology? What types of visits do they prefer to do at home? What works best at the hospital? Do they want to keep using this program?

For Chin and most participants, the answer is yes. These families appreciate saving time, mileage, and being in close access to pediatric subspecialists from the comfort of home.

Parents can conference call from separate locations and share screens with the doctors, which works well if one parent is at work and another is at home – or if they live apart. Children can maintain their normal routine, such as finishing breakfast, homework, playing or staying in bed if they don’t feel well, though it is important to see the child in the virtual visit.

Families can obtain virtual assessments about urgent conditions without taking time off from work or school. Currently, only 10 to 30% of virtual visit patients with concerns about genetic conditions need an in-person, follow-up appointment. Fortunately, many conditions are less urgent than thought at the time of referral. Dr. Shur and specialists also benefit from observing children in their natural environment.

At the symposium, Dr. Shur translates this into clinical terms: reduced no-show visits, the ability to schedule shorter, more flexible visits, the ability to quickly and accurately diagnose conditions and provide care, and the ability to keep children with compromised immune function out of public areas, including waiting rooms. She discussed building rapport with patients, almost all of whom like these flexible care models.

“The idea is that we’re trying to understand what is best done using virtual technology and what is better for those in-person connections. More detailed physical exams take place in person. There are some cases where eye-to-eye contact and sitting in the exam room together is important,” says Dr. Shur. “Virtual visits should never replace in-person care. It’s just a forward way of thinking about: How do we use our time best?”

Case study 1: Saving families time and miles

Dr. Shur notes that for some patients, distance is a deciding factor for scheduling care. One mother’s five-hour round-trip commute to the children’s hospital, without traffic, is now five minutes. As an air-traffic controller, her schedule changes. She values the flexibility of the new program. To connect with Dr. Shur, she logs into the app on her computer or smart phone and brings her 2-year-old son into the video. He has cardiofaciocutaneous syndrome (CFC), a condition that affects 200 to 300 people in the world. As a result of a MAP2K1 gene variant, one of four genes – BRAF, MAP2K1, MAP2K2 and KRAS – associated with CFC, he experiences feeding problems, reflux, constipation and developmental delays.

By scheduling more frequent, but shorter check-ins, Dr. Shur assesses how he responds to treatment and makes recommendations to the mother in real time, such as trying prune juice for digestive health. They talk about rearranging feeding measurements and intervals, including his 2 a.m. dose of a peptide formula, which the mom blends at home to support her son’s growth. This modification equates to more sleep for everyone.

If follow-up tests, such as an X-ray or a blood test are needed, Dr. Shur coordinates these exams with the family at the hospital or at a nearby medical center. Depending on the condition, Dr. Shur may refer the family to an ophthalmologist, cardiologist, neurologist or learning and development specialist.

As a parent, Dr. Shur appreciates the direct approach virtual visits deliver.

“As a mom, if I’m taking my child to the doctor for two hours, I want to know why I’m there,” Dr. Shur says. “What are all the options?”

Case study 2: Observing children at home

Chin, who was also featured in Dr. Shur’s CME presentation, appreciates virtual visits for their convenience and efficiency, but her favorite feature is letting doctors observe her children at home.

“Children act differently outside the home,” says Chin.

For example, instead of describing Rueben’s rapid, rhythmic arm movements, a flinging of the arms, Chin showed neurologists at a scheduled virtual home visit. For Marc DiFazio, M.D., a pediatric neurologist, it was evident that Reuben had a movement disorder commonly seen in children with ASD, which is responsive to medication. In five minutes, her son had a diagnosis. The involuntarily movement wasn’t a behavioral issue, as previously thought, but a movement disorder.

“The regular in-person visit has a beautiful role and it’s very important, but virtual visits bring a different focus,” says Dr. Shur. “We get to see what the child’s life is like, what the home setting is like and what their schedule is like. How can we make their day-to-day life easier?”

Phenylketonuria (PKU), a rare condition that prevents the body from breaking down phenylalanine (Phe), an amino acid in protein, is another condition that pairs well with virtual visits. PKU affects 1 in 10,000 to 15,000 newborns in the U.S. People with PKU often require medication, food-based formulas and a protein-restricted diet to help their body process or regulate Phe.

If a patient with PKU connects through a virtual visit, they (or their parents) can open the refrigerator, talk about low-protein foods, discuss potential barriers to following a low-Phe diet, show the team new supplements or over-the-counter medications they are taking, discuss reactions to new therapies and, for adults, discuss an injectable drug recently approved by the FDA that has side effects but may ultimately allow them to follow a regular diet. These observations may not warrant a traditional trip to the doctor but are important for geneticists and patients to discuss. The goal of these visits is to identify and work around potential health barriers, while preventing adverse health outcomes.

To support this model, a 60-minute in-person visit scheduled every six months to a year can be broken into 15-minute video appointments at more frequent intervals. The result, based on the same amount of clinical time, is a targeted and detailed assessment to support personalized treatment and to help the patient adapt to a low-Phe meal plan.

During the video call, Dr. Shur and the team may prescribe a different medication, order a diagnostic procedure or schedule a follow-up appointment, if necessary. Depending on the situation, the patient will still likely come in for in-person annual visits.

Program assessment: Evaluating visits for each patient

Despite the popularity of virtual visits, Dr. Shur mentions this program isn’t a good fit for everyone – depending on a patient’s preferences. There are also limitations to consider. If a parent is hesitant to try this platform or if the comprehensive physical examination is the first key step, they should schedule in-person visits. The goal is to give parents who are requesting or curious about virtual visits a chance to try the platform. Having a secure area, preferably a private space at home, is important. A Wi-Fi connection and a digital device are required, which may create barriers for some patients.

However, Dr. Shur finds the program can alleviate hurdles – such as transportation challenges. One patient lives two hours away and couldn’t make it in for routine medical visits due to car problems. Now she makes every virtual appointment. For the first time in her life, she can manage medical care for herself and for her children.

Most insurance companies Dr. Shur works with cover virtual visits. The key is to have the virtual connection, or video, so Dr. Shur can still physically see the patient. Otherwise, the visit doesn’t count. A grant from CareFirst covers the costs of visits for patients who are using Medicaid or who don’t have medical insurance.

Parallel trends are happening across the country and for other conditions. Officials at the Federal Communications Commission (FCC) are reviewing a three-year pilot to expand the use of connected care services, like virtual visits, for low-income Americans living in rural areas. The Rural Health Care Program, funded by the FCC, supports hospitals that implement telehealth programs.

The American Academy of Pediatrics (AAP) released a statement in 2015 about telemedicine technologies, noting that if these technologies are applied in a synergistic model under one health care system or are guided by a family doctor, they can transform pediatric health care.

The key is to avoid a fragmented virtual health system.

The AAP applauds virtual connections that support collaborations among pediatric physicians, subspecialists and surgeons, reduce travel burdens for families, alleviate physician shortages, improve the efficiency of health care and enhance the quality of care and quality of life for children with special health care needs.

Planning for the future, investing in physician-patient partnerships

A poster at the Future of Pediatrics conference

The American Academy of Pediatrics supports telemedicine technologies that enhance the quality of care and the quality of life for children with special health care needs.

“The feedback has been phenomenal,” Dr. Shur says about the future of virtual visits for genetics. “Virtual visits will never replace in-person visits. They will be used in conjunction with in-person visits to maximize care.”

Dr. Regier and Jamie Frasier, M.D., Ph.D., medical geneticists at Children’s National, are introducing virtual visits to their patients, and many providers plan to do so as the program expands.

Sarah Viall, PPCNP, a nurse practitioner and newborn screening specialist, works with Dr. Shur and the geneticists during some visits to explain non-urgent newborn screening results to parents through virtual connections. Some parents find it’s easier to dial in during lunch or while they are together at home.

To improve education for patients and families, the education and technology committees at the RDI – led by geneticists and genetic counselors in partnership with the Clinical and Translational Science Institute at Children’s National – launched a new smartphone app called BearGenes. Families can watch 15 videos about genetics on the pin-protected app or view them online. The interactive guide serves as a gene glossary for terms patients may hear in a clinical setting. Topics range from genetics 101, describing how DNA is encrypted in the body through four letters – A, T, C and G – to different types of genetic tests, such as whole exome sequencing, to look for differences in the spelling of genes, which the genetic counselors explain are genetic mutations.

“As we unite patients with virtual health platforms and new forms of technology, we want to see what works and what doesn’t. We want their feedback,” Dr. Shur reemphasizes. “Virtual visits are a dynamic process. These visits only work through patient partnership and feedback.”

As Chin navigates atypical 22q11.2 deletion syndrome and ASD, she continues to appreciate the virtual waiting room and the ease of access virtual visits provides.

Sharing screens during virtual visits enables Chin to examine and better understand her children’s abdomen and kidney sonograms, cardiology reports and hearing exams. It forces everyone in the visit to focus on one topic or image at a time, strengthening the connection.

Chin still has questions about her children’s DNA, but she’s getting close to having more answers. She’s eager to see Caleb’s genetic test results and to work with Hillary Porter, M.S., CGC, the family’s genetic counselor, to interpret the data.

“We’re all learning together,” Dr. Shur says about the new pilot program, which applies to genomics at large.

As research about 22q11.2 deletion syndrome advances, geneticists, pediatric subspecialists and pediatricians are unifying efforts to work as one diagnostic and treatment team. Virtual visits enable faster consultations and can shorten diagnostic odysseys, some of which may take up to five years for children with rare disorders.

Attendees at the Future of Pediatrics conference

Nearly 400 pediatricians attend the Children’s National Future of Pediatrics CME symposium to learn about the future of pediatrics and about ways to work together as a diagnostic and treatment team.

For Chin, by better understanding how a tiny fragment of a missing chromosome may influence her children’s growth and development, she is already making long-term plans and coordinating multidisciplinary medical treatment for each child.

She hopes that by sharing her story and knowledge about 22q11.2 deletion syndrome, she can help other parents navigate similar situations. Heradvice to parents is to follow up on lingering questions by bringing them up with your medical team.

Chin is optimistic and happy she did. She’s grateful for the virtual visits program, which simplifies complex care for her family. And she’s still waiting, but she hopes to learn more about her middle child’s DNA, unraveling another medical mystery.

Read more about the virtual visits pilot program at Becker’s Hospital Review and listen to an interview with Dr. Shur and Shannon Chin on WTOP.

asthma inhailer

Picture imperfect: Eliminating asthma triggers through smartphones

asthma inhailer

Children’s National is among five awardees sharing $10 million in funding under Fannie Mae’s Sustainable Communities Innovation Challenge: Healthy Affordable Housing, a national competition to identify innovative ideas to help children and families enjoy safer homes. Fannie Mae made the funding announcement on May 21, 2019.

Children’s funding will underwrite a pilot program to use smartphones to enable virtual home visits, leveraging the skills of Children’s pediatric asthma specialists, health educators and community housing remediation specialists who will video conference with families in the home to identify potential housing asthma triggers.

According to the Centers for Disease Control and Prevention, 1 in 12 children and adolescents (6 million) have asthma, and one in six children with asthma visit the emergency department each year. In Washington, D.C., substandard housing can play an outsized role in triggering asthma exacerbations. Asthma-related hospital visits are 12 times higher in the city’s poorest neighborhoods, compared with affluent ZIP codes.

Working with community partners, Children’s faculty aim to eliminate asthma triggers right at the source, improving children’s well-being and creating healthier homes.

Right now during in-home visits, staff look for holes under kitchen sinks and gaps in the walls or flooring where pests and vermin might enter as well as leaks where mold and mildew can bloom. These systematic visits yield detailed notes to best direct resources to remediate those housing woes. The in-person visits however, are labor intensive and require delicate diplomacy to first open doors then to point out potential asthma triggers without coming off as judgmental.

“The beauty of our innovation is that residents can show us these same problematic locations using their smartphones, facilitating our efforts to target resources for that household. It’s a win for Children’s families because eliminating asthma triggers in the home means our kids will miss fewer school days, improving their lives and overall health,” says Ankoor Y. Shah, M.D., MBA, MPH, medical director for Children’s IMPACT DC Asthma Clinic.

Children’s collaborative project includes a number of partners, including:

Dr. Shah says the project will start in July 2019 with the pilot of virtual home visits starting in early 2020. This proof-of-concept model will hopefully be able to be replicated in other cities across the country.

Dr. Bear Bot

Advances in telemedicine start with new cardiac critical care robot

Dr. Bear Bot

Dr. Bear Bot’s “robot-only” parking space in the Cardiac ICU. Alejandro Lopez-Magallon, M.D., is featured on the robot display screen, where he drives the robot from his location in the command center, in order to visit patient rooms and capture additional medical information and connect with patients, parents, and attending nurses and physicians.

The telemedicine robot at Children’s National arrived in late August 2018 and recently completed a 90-day test period in the tele-cardiac intensive care unit (cardiac ICU) at Children’s National. The bot travels between rooms as a virtual liaison connecting patients and attending nurses and physicians with Ricardo Munoz, M.D., executive director of the telemedicine program and the division chief of critical cardiac care, and Alejandro Lopez-Magallon, M.D., a cardiologist and medical director of the telemedicine program.

Drs. Munoz and Lopez-Magallon use a nine-screen virtual command center to remotely monitor patient vitals, especially for infants and children who are recovering from congenital heart surgery, flown in for an emergency diagnostic procedure, such as a catheterization, or who are in the process of receiving a heart or kidney transplant. Instead of traveling to individual rooms to check in on the status of one patient, the doctors can now monitor multiple patients simultaneously, enhancing their ability to diagnose, care for and intervene during critical events.

If Drs. Munoz or Lopez-Magallon need to take an X-ray or further examine a patient, they drive the robot from its ‘robot-only’ parking space adjacent to the nurse’s station, and connect with attending doctors and nurses in the teaming area. The onsite clinicians accompany one of the telemedicine doctors, both of whom remain in the command center but appear virtually on the robot’s display screen, to the patient’s room to capture additional medical information and to connect with patients and families.

Over time, the telemedicine team will measure models of efficiency in the tele-cardiac ICU, such as through-put, care coordination, and standards of safety, quality and care, measured by quality of life and short- and long-term patient health outcomes. This test run will serve as a model for future command centers offering remote critical care.

Ricardo Munoz and Alejandro Lopez-Magallon

(R) Ricardo Munoz, M.D., executive director of the telemedicine program and the division chief of critical cardiac care, and Alejandro Lopez-Magallon, M.D., a cardiologist and the associate medical director of the telemedicine program in the tele-cardiac ICU command center.

“As technology and medicine advance, so do our models of telemedicine, which we call virtual care,” says Shireen Atabaki, M.D., M.P.H., an emergency medicine physician at Children’s National, who manages an ambulatory virtual health program, which enables patients to use virtual health platforms to connect with doctors, but from the comfort of their home. “We find the patient-centered platforms and this new technology saves families’ time and we’re looking forward to studying internal models to see how this can help our doctors, enabling us to do even more.”

The ongoing virtual connection program that Dr. Atabaki references launched in spring 2016 and has enabled 900 children to connect to a doctor from a computer, tablet or smart phone, which has saved families 1,600 driving hours and more than 41,000 miles over a two-year period. Through this program, virtual care is provided to children in our region by 20 subspecialists, including cardiologists, dermatologists, neurologists, urgent care doctors, geneticists, gastroenterologists and endocrinologists.

To extend the benefits of virtual communication, while saving mileage and time, Dr. Atabaki and the telemedicine team at Children’s National will partner with K-12 school systems, local hospitals and health centers and global health systems.

The Children’s National robot was named Dr. Bear Bot after a 21-day voting period with patients and staff, beating 14 other child-selected names, including SMARTy (Special Medical Access to Remote Technology), Dr. Bot and Rosie. Dr. Bear Bot celebrated with an official reveal party on Valentine’s Day, which was streamed to over 220 patients through the hospital’s closed-circuit television and radio station.

Maureen Monaghan

Using text messages and telemedicine to improve diabetes self-management

Maureen Monaghan

Maureen Monaghan, Ph.D., C.D.E., clinical psychologist and certified diabetes educator in the Childhood and Adolescent Diabetes Program at Children’s National Health System, awarded nearly $1.6 million grant from American Diabetes Association.

Adolescents and young adults ages 17-22 with Type 1 diabetes are at high risk for negative health outcomes. If fact, some studies show that less than 20 percent of patients in this population meet targets for glycemic control, and visits to the Emergency Department for acute complications like diabetic ketoacidosis peak around the same age.

The American Diabetes Association (ADA) awarded Maureen Monaghan, Ph.D., C.D.E., clinical psychologist and certified diabetes educator in the Childhood and Adolescent Diabetes Program at Children’s National Health System, nearly $1.6 million to evaluate an innovative behavioral intervention to improve patient-provider communication, teach and help patients maintain self-care and self-advocacy skills and ultimately prepare young adults for transition into adult diabetes care, limiting the negative adverse outcomes that are commonly seen in adulthood.

Dr. Monaghan is the first psychologist funded through the ADA’s Pathway to Stop Diabetes program, which awards six annual research grants designed to spur breakthroughs in fundamental diabetes science, technology, diabetes care and potential cures. Dr. Monaghan received the Accelerator Award, given to diabetes researchers early in their careers, which will assist her in leading a behavioral science project titled, “Improving Health Communication During the Transition from Pediatric to Adult Diabetes Care.”

“Behavior is such a key component in diabetes care, and it’s wonderful that the American Diabetes Association is invested in promoting healthy behaviors,” says Dr. Monaghan. “I’m excited to address psychosocial complications of diabetes and take a closer look at how supporting positive health behavior during adolescence and young adulthood can lead to a reduction in medical complications down the road.”

During the five year study, Dr. Monaghan will recruit patients ages 17-22 and follow their care at Children’s National through their first visit with an adult endocrinologist. Her team will assess participants’ ability to communicate with providers, including their willingness to disclose diabetes-related concerns, share potentially risky behaviors like drinking alcohol and take proactive steps to monitor and regularly review glucose data.

“The period of transition from pediatric to adult diabetes care represents a particularly risky time. Patients are going through major life changes, such as starting new jobs, attending college, moving out of their parents’ homes and ultimately managing care more independently,” says Dr. Monaghan. “Behavioral intervention can be effective at any age, but we are hopeful that we can substantially help youth during this time of transition when they are losing many of their safety nets.”

Study leaders will help participants download glucose device management tools onto their smartphones and explain how to upload information from patients’ diabetes devices into the system. Participants will then learn how to review the data and quickly spot issues for intervention or follow-up with their health care provider.

Patients also will participate in behavioral telemedicine visits from the convenience of their own homes, and receive text messages giving them reminders about self-care and educational information, such as “Going out with your friends tonight? Make sure you check your glucose level before you drive.”

At the study’s conclusion, Dr. Monaghan anticipates seeing improvements in psychosocial indicators, mood and transition readiness, as well as improved diabetes self-management and engagement in adult medicine.

Taking telemedicine to heart

For seven years, a Children’s National team has worked on new technologies to blunt the severity of rheumatic heart disease around the world, vastly improving patients’ chances of avoiding serious complications.

Rheumatic heart disease (RHD) is caused by repeated infections from the same bacteria that cause strep throat, which progressively lead to worsening inflammation of the heart’s valves with each successive infection. Over time, these valves thicken with scar tissue and prevent the heart from effectively pumping life-sustaining, oxygenated blood. The devastating condition, which was endemic in the United States before 1950, is now so rare that few outside the medical community have even heard of it. But in the developing world, explains Craig Sable, M.D., director of echocardiography and pediatric cardiology fellowship training and medical director of telemedicine at Children’s National Health System, RHD is nearly as common as HIV.

“RHD is the world’s forgotten disease,” Dr. Sable says. An estimated 32.9 million people worldwide have this condition, most of whom reside in low- to middle-income countries — places that often lack the resources to effectively diagnose and treat it.

Dr. Sable, Andrea Z. Beaton, M.D., and international colleagues plan to overturn this paradigm. For the last seven years, the team has worked on developing new technologies that could blunt the severity of RHD, vastly improving patients’ chances of avoiding its most serious complications.

At the heart of their approach is telemedicine — the use of telecommunications and information technology to provide clinical support for doctors and other care providers who often practice a substantial distance away. Telemedicine already has proven extremely useful within resource-rich countries, such as the United States, according to Dr. Sable. He and Children’s National colleagues have taken advantage of it for years to diagnose and treat pediatric disease from a distance, ranging from diabetes to asthma to autism. In the developing world, he says, it could be a game-changer, offering a chance to equalize healthcare between low- and high-resource settings.

In one ongoing project, a team led by Drs. Sable and Beaton is using telemedicine to screen children for RHD, a critical step to making sure that kids whose hearts already have been damaged receive the antibiotics and follow-up necessary to prevent further injury. After five years of working in Africa, the team recently expanded their project to Brazil, a country riddled with the poverty and overcrowding known to contribute to RHD.

Starting in 2014, the researchers began training four non-physicians, including medical technicians and nurses, to use handheld ultrasound machines to gather the precise series of heart images required for RHD diagnosis. They deployed these healthcare workers to schools in Minas Gerais, the second-most populous state in Brazil, to screen children between the ages of 7 and 18, the population most likely to be affected. With each worker scanning up to 30 children per day at 21 area schools, the researchers eventually amassed nearly 6,000 studies in 2014 and 2015.

Each night, the team on the ground transmitted their data to a cloud server, from which Children’s cardiologists, experts in RHD, and a regional hospital, Universidade Federal de Minas Gerais, accessed and interpreted the images.

“There was almost zero downtime,” Dr. Sable remembers. “The studies were transferred efficiently, they were read efficiently, and the cloud server allowed for easy sharing of information if there was concern about any questionable findings.”

In a study published online on November 4, 2016 in the Journal of Telemedicine and Telecare, Dr. Sable and colleagues reported the project’s success. Together, the team diagnosed latent heart disease in 251 children — about 4.2 percent of the subjects screened — allowing these patients to receive the regular antibiotics necessary to prevent further valve damage, and for those with hearts already badly injured to receive corrective surgery.

The researchers continued to collect data after the manuscript was submitted for publication. The team, which includes Drs. Bruno R. Nascimento, Adriana C. Diamantino, Antonio L.P. Ribeiro and Maria do Carmo P. Nunes, has screened a total of roughly 12,000 Brazilian schoolchildren to date.

Dr. Sable notes there is plenty of room for improvement in the model. For example, he says, the research team has not found a low-bandwidth solution to directly transmit the vast amount of data from each screening in real time, which has caused a slight slowdown of information to the hospital teams. The team eventually hopes to incorporate RHD screenings into annual health exams at local health clinics, sidestepping potential drawbacks of school day screenings.

Overall, being able to diagnose RHD using non-physicians and portable ultrasounds could eventually help Minas Gerais and additional low- to middle-income areas of the world where this disease remains endemic reach the same status as the United States and other resource-heavy countries.

“We’re putting ultrasound technology in the hands of people who otherwise wouldn’t have it,” says Dr. Sable, “and it could have a huge impact on their overall health.”

This work was supported by a grant from the Verizon Foundation and in-kind donations from General Electric and ViTelNet.

Diabetes telemedicine program launches study survey and retrospective chart review

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Telemedicine isn’t new. And diabetes telemedicine isn’t new either. But the Diabetes Program at Children’s National Health System is doing more than just providing education and support groups via telemedicine. The largest pediatric diabetes program in the Mid-Atlantic region is evaluating just how successful its telemedicine program is with a six-month survey and retrospective chart review. “This is our opportunity to prove [the success] not anecdotally but with evidence,” says Colleen Meehan, M.D., M.P.H., a third-year resident at Children’s and one of the co-investigators for the project.

According to published literature, the Children’s National cohort is one of the largest of any other diabetes telemedicine program and extends the time period of care.

History of the program

Around the world, there isn’t enough endocrinology care, says Fran Cogen, M.D., C.D.E. Dr. Cogen and others at Children’s National have recognized the need right in their region—and worldwide—to deliver specialty care to patients who live too far from Washington, DC.

Many of the patients Dr. Cogen sees at Children’s National live on Maryland’s Eastern Shore, including the island of Tangiers, and in Delaware. That’s a two-and-a-half-hour drive over the Chesapeake Bay Bridge and an obstacle to scheduling follow-up appointments. To solve this issue, Children’s National partnered with Peninsula Regional Medical Center, in Salisbury, Md., three years ago to improve patients’ quality of life while getting them the care they needed.

How the program works

A nurse practitioner at Peninsula Regional sees patients for blood glucose checks and more frequently. Once a month, or depending on the severity of the diabetes, Dr. Cogen will observe—on a large TV screen from Children’s National—physical examinations, and then review insulin regimens and dosing, download the glucose meters in real time, discuss concerns, and develop treatment plans. There’s diabetes-specific software that patients can see at Peninsula Regional.

What the study can reveal

A 2014 pilot survey showed caregivers had great satisfaction with the program. Now, the team wants to formally study caregiver satisfaction and patient quality of life, as measured by a validated diabetes-specific Pediatric Quality of Life survey. With the largest cohort in diabetes telemedicine (75, type 1), it will also look at frequency of blood glucose monitoring, HbA1c, incidence of ER visits and hospitalizations for DKA or hypoglycemia, and percentage of missed clinic appointments. The team believes that this will show the diabetes telemedicine program is as effective as traditional face-to-face visits.

Other specialties at Children’s National are planning to provide telemedicine services, and some already do. The Diabetes Telemedicine Program is looking to expand coverage in Delaware, Maryland, and Virginia, to other rural areas that lack pediatric endocrinology or diabetes specialists.

“We can deliver quality care and develop a personal relationship without actually being physically present in the exam room,” Dr. Cogen says.