MCHRI scholar shows how exercise training delivered via video conferencing helps kids improve their cardiovascular health

Wednesday, June 3, 2020

By Laura Hedli

It started with a personal story. Back in 2007, in Boston, Associate Professor of Pediatric Cardiology Seda Tierney, MD, was pregnant with her first child when she enlisted the help of a personal trainer, Sam Berry. She was having lower back pain and wanted to learn some exercises that might help strengthen her muscles. Dr. Tierney ended up enjoying her sessions with Berry, so much so that she asked if they could try online training when she moved to the West Coast to join the faculty at Stanford in 2011. Skype provided the platform for them to continue working out together in real time.

Soon after she arrived at Stanford, Dr. Tierney had a thought: Would an exercise training intervention using Skype be feasible and help kids improve their cardiovascular health? Parents frequently cited taking time off work and/or school, transportation, and long commute times as significant barriers to getting their children the care they need. Technology could offer a solution, a portal to wellness with direct, real-time supervision by a trainer. 

Dr. Tierney first piloted a live-video diet and exercise intervention in children who were overweight and obese. A 2012 Pilot/Early Career Award of $35,000 from Stanford Maternal and Child Health Research Institute (MCHRI) supported the project and was the catalyst for all that followed. The results showed adolescents regularly joined their training sessions via live-video conferencing and benefited from the 12-week intervention.

Next, the American Heart Association funded a clinical trial led by Dr. Tierney to test this intervention in children who had received a pediatric heart transplant. Published in the Journal of the American Heart Association in February 2020, the findings concluded that this live-video, supervised diet and exercise intervention was not only feasible but also successful at improving markers of vascular and functional health in this at-risk population.

Most recently, Dr. Tierney received a $3.37 million five-year award from the National Heart, Lung, and Blood Institute – the latest in her line of awards to study telehealth interventions. She and her team will evaluate this exercise intervention in 150 children born with single ventricles (“half a heart”) who have undergone a surgery known as the Fontan procedure.

The Fontan operation is the last in a series of cardiac palliative surgeries performed in children born with single ventricles. The series extends from the newborn period into toddlerhood and involves diverting blood from the inferior and superior vena cavae to the pulmonary arteries, bypassing the single ventricle.

Even though children born with single ventricles can now survive into adulthood with these palliative surgeries, their long-term outcomes remain poor. Unfortunately, by the age of 40, 50% of these patients will have died or undergone a heart transplant.  Factors that contribute to the onset and progression of heart failure in Fontan patients remain incompletely understood. It has been established, however, that Fontan patients have poor exercise capacity, associated with a greater risk of morbidity and mortality, in addition to decreased muscle mass, abnormal muscle function, and endothelial dysfunction. All of these factors contribute to disease progression.

Limited exercise interventions in children with congenital heart disease have demonstrated that exercise is safe and effective; however, these studies have been conducted in small, heterogeneous groups with few Fontan participants. Furthermore, children enrolled in clinical, in-person exercise programs often have poor adherence, mostly due to difficulties related to transportation, missing school, or work.

Based on this evidence, the RE-ENERGIZE FONTAN study will determine if a live-video supervised exercise intervention improves cardiac and physical capacity, muscle mass, strength, and endothelial function in children who have received the Fontan procedure. Eligibility for participation is straightforward: Any child between the ages of 9-19 with the Fontan circulation who has been cleared for exercise by their cardiologist. The study will provide participants with live-video sessions with a trainer, tablet, Fitbit, and exercise gear like resistance bands and medicine balls.

Now that these children with single ventricles can survive into adulthood, I really would like to shift our mindset to prescribing exercise instead of restricting from exercise

“Now that these children with single ventricles can survive into adulthood, I really would like to shift our mindset to prescribing exercise instead of restricting from exercise,” says Dr. Tierney. “The results of our study will inform us toward our overarching goal of promoting regular exercise by educating these patients in how to exercise and use their bodies and empowering them, and providing routine and directly supervised exercise sessions, all within a safe framework.”

Persistence pays

Obtaining funding to demonstrate the efficacy of live-video diet and exercise interventions for pediatric patients hasn’t been a forward trajectory, but Dr. Tierney is nothing if not persistent. She applied to the National Institutes of Health (NIH) several times for funding before successfully competing for her current award.

“I have tried so many different ways to get the buy-in from the NIH. The critiques were all valid, such as, ‘Of course exercise is good for you, but why should we fund it?’” Dr. Tierney says. Her years of research showed exercise intervention delivered via live-video conferencing was not only feasible with excellent adherence but was also able to improve cardiovascular health for youth at risk; still, narrowing the focus to a specific population and defining other novel outcomes was critical.

It’s her opinion that the success of the Fontan grant was due to its multi-disciplinary approach featuring outstanding collaborators and its assessment of multiple measures of health. She believes the team science work resulted in the grant being awarded a perfect score of 10, which is often a one-time experience in an NIH investigator’s lifetime.

Angela Chen, who has served as Dr. Tierney’s research coordinator, helped to pilot the larger RE-ENERGIZE FONTAN study design using three adolescents with Fontan circulation. The team had to be extra careful when developing the exercise intervention to be performed three times a week by these participants. Children with Fontan circulation often have never exercised before in their life because doing so seemed too risky, too scary, or was previously prohibited by their doctor. Showing the NIH they could manage these participants concurrently during small-group exercise sessions was another important factor in securing funding, Chen believes.

This exploratory work for the Fontan NIH grant submission was made possible thanks to a portion of funds earmarked from Dr. Tierney’s MCHRI Faculty Scholar award. In 2017, Dr. Tierney was named the Stanford Maternal and Child Health Research Institute Faculty Scholar and received $300,000 to research another telehealth question: Could parents of children with a genetic disorder known as Marfan syndrome successfully perform focused echocardiograms on their children from the comfort of their homes using a hand-held echo device? And how would these home echos compare to the “gold standard” echocardiograms? The latter are performed by trained sonographers on-site at a clinic to assess the aortic root dimension.

“This scholarship award just came in time when I was running very low on funds,” Dr. Tierney says. “It kept me afloat and got my projects and team going.”

Telehealth’s moment

It’s plain to see how Dr. Tierney’s research is particularly relevant for this moment. Experts, including Stanford Medicine’s own Dean Lloyd Minor, have shared how the COVID-19 pandemic has accelerated advancements in telemedicine.

Based on her studies’ findings, Dr. Tierney believes telehealth models can indeed improve quality of life for patients and families, and especially now that wi-fi connectivity has improved and video conferencing platforms are more sophisticated.

“It’s a big burden for these patients to come to a place like Stanford,” she says. “I think we have to give parents or even local physicians or local medical teams more tools so they can check in with us, rather than transfer a patient who lives so far away because we’re worried about them.”

Dr. Tierney’s goal is to integrate telehealth exercise training into clinical practice for Stanford pediatric cardiac patients, and she’s on her way to making this a reality. In 2011, she established the Vascular Research Laboratory within Stanford’s New Heart Center. Having dedicated clinical space has allowed her team to ramp up recruitment and see patients at their convenience, not just when a room is available. In the future, Dr. Tierney would like to have a pediatric cardiac rehabilitation and exercise program delivered via live-video conferencing from Stanford.  

Berry is the Vascular Research Laboratory’s master trainer, and he will help guide the Fontan participants through their fitness training from where he’s based in Maine. Chen, who has worked remotely with Berry for the last four years, has observed how the live-video interventions have impacted children’s lives.

“A lot of these kids want to exercise or want to have more physical activity, but don’t necessarily have the resources or motivation or confidence,” says Chen, who is finishing up her position at Stanford to begin medical school in July 2020. “If you can give these kids the resources they need – a trainer, encouragement from the coordinator and our study team, equipment, and also just general information and knowledge on exercise and good form – they can really excel. They can also take this information that they’ve learned and apply it to their life.” 

Indeed, Dr. Tierney has witnessed the transformations in her patients and their families. She envisions a future where telemedicine benefits are expanded, and where exercise training is covered by insurance for all American citizens and integrated into our healthcare model – a decidedly preventative approach.  

Laura Hedli is a writer for the Division of Neonatal and Developmental Medicine in the Department of Pediatrics and contributes stories to the Stanford Maternal and Child Health Research Institute.