Preparing patients and families to manage ventricular assist devices

Beth Hawkins ventricular assist devices

Children in severe heart failure sometimes have a ventricular assist device (VAD) implanted in their chest. VADs are electrically-powered heart pumps that can tide children over while they wait for a heart transplant. They can also be implanted long term if a child is ineligible for transplant, or simply buy children time to recover their own heart function.

Because problems with VADs can be life-threatening, families need extensive training in managing the device and its external controller at home. Nurse practitioner Beth Hawkins RN, MSN, FNP-C, and her colleagues in the Boston Children’s VAD Program begin the training at the child’s hospital bedside while they are still in the cardiac ICU. But despite lectures, demos and practice opportunities, the prospect of maintaining a VAD remains terrifying for many parents and children.

“A lot of families feel their child is attached to a ticking time bomb that could go off at any time,” says Hawkins. “Many say taking a child home on a VAD feels like having a newborn baby again.”

Hawkins realized that families needed more support. Working closely with Christina VanderPluym, MD, medical director of the VAD Program, and fellow nurse practititioner Courtney Ventresco, NP, she’s leading two projects. One is a VADKids app (sidebar below) that allows patients and parents to communicate with the VAD team, access educational information and log vital signs.

The other project, a partnership with Boston Children’s Simulator Program (SIMPeds), allows families to take part in lifelike “dress rehearsals” with the VAD to boost their confidence.

Rehearsing the common and the scary

rehearsing scenarios with ventricular assist devices
Hawkins (at right) preps parents for a VAD simulation

Using child- or adolescent-sized mannequins in a room set up like a child’s home bedroom, parents can practice both routine responsibilities and managing difficult situations. Simulation scenarios include:

  • changing the sterile dressing on the driveline that connects the VAD with the controller
  • managing a fainting episode
  • measuring the child’s mean arterial blood pressure using a Doppler machine
  • replacing the VAD’s controller with a backup
  • packing a “Go Bag” for trips outside the home, with backup batteries, a backup controller and emergency contact information.

“We made the mannequins as realistic as possible,” says Hawkins. “We even recorded the hum of the VAD device and put it in the mannequin’s chest.”

Bringing in emotion

home app for managing ventricular assist devicesBoston VADKids® is a home-monitoring app for smartphone, tablet or computer that patients are starting to use to track vital signs, access device information and stay in touch daily with the Boston Children’s VAD team. “They can securely text us messages and pictures, access their VAD emergency information easily and log their VAD’s daily information to send to us,” says Hawkins, who is helping to lead the project’s development with a hospital grant.
home app for managing ventricular assist devices
Patients can choose to include or exclude their parents on the communications. Their input information is reviewed daily by a VAD team member and integrated into the electronic medical record. Texts are monitored 24/7, and emails notify the team of any out-of-range measurements. Hawkins and colleagues can then text back secure messages like, “Your INR [a measure of clotting tendency] today was 2.5, please take 5 mg of Coumadin tonight and retest in 1 week.”  (Click images to enlarge)

The mannequins also talk, voiced by SIMPeds staff or often Hawkins herself, in a nearby control room. This ramps up the emotional intensity of the simulations.

“It’s easy to change out a battery in a conference room where it’s quiet, but it’s different when your daughter’s saying, ‘Hurry up, I have to pee!’ or ‘I don’t want to get up!’” says Hawkins. “Because I know the patients, I can say things that I know their children would say to make the scenarios more realistic.”

In one scenario, the VAD’s external power sources both come unplugged, causing the device to stop. Parents hear an alarm and have to recognize the blank screen on the VAD controller, figure out that it’s unplugged, then dig under the “child’s” blankets, find the electrical cord and plug the controller back into a power source. All the while, the “child” is saying, “I don’t feel good! My chest feels funny!” “Why is the alarm going off — make it stop!”

Developing a VAD curriculum

Hawkins and her colleagues created the scenarios based on learning gaps they’ve observed and actual emergencies families have dealt with. She and the VAD team took part in initial simulations themselves, going through the scenarios with actors playing the parents. “The actors gave us feedback on what worked or didn’t work and what helped reassure them and make them feel confident,” Hawkins says.

The team also consulted with a prior patient, who told them that it would make him anxious to see his mom fumble and not know what to do during the scenarios. For that reason, the VAD team conducts the scenarios initially with parents alone, before involving the child or adolescent. Based on one mother’s input, a future simulation will involve the need for CPR, enabling parents to practice that emergency scenario.

The VAD simulations are part of SIMPeds’ recently-introduced “Preparing You” program for family caregivers and patients. To date, the program has also run simulations for Boston Children’s Autism Spectrum Center (preparing kids for hospital visits), the CAPE program (supporting children on ventilator assistance) and the Orthopedic Center (preparing patients for scoliosis surgery).  Preparing You has even run simulations for therapy dogs in training, ensuring they are ready for real hospital environments.

Learn more about the VAD Program and SIMPeds.