Akron Children's Hospital's New Virtual Clinic Gives Children the Care They Need at Home

With the Cardiac LIFT Clinic, Akron Children's Hospital is giving single-ventricle patients and their families an opportunity to 'survive and thrive' at home, rather than in a hospital or clinic.

Young children with acute care needs don't necessarily have to be in a hospital to get them. Healthcare organizations are now using virtual care platforms and digital health tools to give these patients and their families the care they need at home.

Akron Children's Hospital has gone all-virtual with the Cardiac LIFT (Lifelong Interventions Focused on Thriving) Clinic, reportedly the first program in the country to offer completely virtual care for young single-ventricle patients from prenatal early diagnosis through early adulthood. The program enables families to transition from an NICU to the home and stay there.

"We want [these patients] to survive and thrive," says Kathyrn Wheller, MSN, APRN-CNP, a pediatric nurse practitioner and the clinical lead for the Cardiac LIFT Clinic. "The single-ventricle population is a complex population for cardiology patients in general. This program gives them … that freedom."

Single-ventricle patients are born with one lower chamber of the heart that is smaller, underdeveloped, or missing a valve, and occur roughly in five out of every 100,000 newborns. Three of the most common diagnoses are Hypoplastic Left Heart Syndrome, Pulmonary Atresia/Intact Ventricular Septum, or Tricuspid Atresia.

They start their lives in a neonatal intensive care unit (NICU), and require open-heart surgery at 2-6 weeks, 4-6 months, and 3-5 years to reconstruct their hearts as they grow. These surgeries are called Fontan procedures, and for that reason the patients are often called Fontan patients.

Kathyrn Wheller, MSN, APRN-CNP, clinical lead for the Cardiac LIFT Clinic at Akron Children's Hospital. Photo courtesy Akron Children's Hospital.

The survival rate for all three surgeries used to be low, but improvements in surgical techniques and clinical care have pushed that rate upwards, so that many children can now expect to live into their 40s, if not longer.

Because of the complex nature of these surgeries and care management, single-ventricle patients and their families spend a lot of time in the hospital, clinics, and doctor's offices, meeting with a care team that often consists of several specialists. At Akron Children's, executives had been mapping out a full, multi-disciplinary clinic for these patients.

"Then COVID hit," says Wheller. "We skipped right over the planning and launched our program [on a virtual platform], focusing on the first few months. It's not that easy to do in the cardiac world, but we had to do it."

Wheller said the hospital made plans to go to a hybrid setup once the pandemic waned, "but the virtual visits went great. We didn't need to see them in person when we could do everything we'd need to do with a virtual visit."

The Cardiac LIFT clinic opened in January 2021, and has conducted more than 130 unique visits for about 70 of the estimated 140 patients within Akron Children's Hospital's coverage area (another 35 patients are adults, who receive care separately). Wheller says those numbers will grow in time, because the hospital will be able to serve patients and their families for a broader geographic area.

Wheller says the platform not only allows the patient and family to meet with the care team and specialists from the comfort of their own home, but it gives that care team an opportunity to see more of that patient's home life and environment, which could factor into care management plans. And in a less formal setting than a doctor's office, patients, family members, and the care team could talk about diet and exercise, behavioral health issues, and other factors that affect that patient's health and wellness.

"When you see them in their home environment, you understand better the challenges they face, and just as importantly, the challenges their family faces," Wheller points out. "You can then make more reasonable plans for care."

The platform also helps the care team. Specialists can be brought in virtually, no matter where they're located, and scheduled to meet individually with the patient or as a team. Through an audio-visual link they can arrange to meet weekly or bi-weekly, especially during the first few months, then monthly or as needed.

Wheller says the program is also incorporating remote patient monitoring tools, which allow the care team to keep a daily eye on cardiac function and other vital signs, tracking the trajectory of the heart and the patient in between necessary in-person appointments.

Sara Rush, MD, Akron Children's Hospital's chief medical information officer, says the platform allows the care team to be creative in how it develops a care management plan. They can include physical therapists, nutritionists, behavioral healthcare providers, teachers, and social workers as the need arises.

"This is not the way we learned to practice medicine, so it takes a little time to get used to things," she says. "Then you start to realize that reaching out and pulling in all these resources makes so much sense. You can even bring in community resources."

While the platform is designed with the patient at its center, there are clear benefits for parents and other caregivers as well. Virtual care can help to reduce the stresses on parents and caregivers who struggle with their own health and wellness, cutting down on travel time to and from the doctor's office and missed work, and offering resources for coping with the burden of being a caregiver. Many health systems, in fact, are integrating family and caregiver services and resources into their virtual care programs, with the understanding that a patient's health is directly affected by the health and wellness of those around him or her.

"This is one of those things that can make us better at what we do," says Wheller.