Every day, clinicians at the Boston Children’s Hospital Heart Center provide care for kids with the most complex and life-threatening heart conditions. But that’s only part of the story. They also donate their time, knowledge and skill to helping children with congenital heart defects around the world. Two such endeavors include the Hearts and Minds of Ghana’s mission trip and the International Quality Improvement Collaborative for Congenital Heart Disease (IQIC), a dissemination project that works with 25 countries around the globe.

Hearts and Minds of Ghana: Bringing cardiac care to children in need

This past October marked Hearts and Minds of Ghana’s tenth trip to Kumasi. The mission project is the vision of Francis Fynn-Thompson, MD, a Boston Children’s surgeon who originally hails from Ghana. The goal is to help fill the region’s much-needed void in pediatric cardiac care.

Every fall, a team from Boston Children’s arrives at the Komfo Ankoye Teaching Hospital (KATH) at the University of Ghana to perform open heart surgery on children who might otherwise never receive surgical care.

“We serve a very large catchment area of at least 5 to 10 million people,” says Michael Goldsmith, MD, a senior fellow in cardiovascular critical care who joined the team for the first time in 2017. “There is one local doctor at the hospital who identifies potential candidates for surgery throughout the year; then he tells them to come back and see us in the fall.”

Goldsmith with Boston Children’s pharmacists, Esther and Stephen Chu, and patients Stephanie and Isaac

Within a few hours of their arrival, the team sets up a cardiac operating room complete with a cardiopulmonary bypass machine, a four-bed cardiac intensive care unit with two ventilators and bedside monitoring, and a four- to eight-bed step-down unit, as well as a complete pharmacy.

During their most recent trip, the team evaluated more than 100 kids and performed 17 surgeries on 16 children, all over the course of 10 days.

“We screen patients the first few days we’re there, then we sit down as a group and determine which children are the best surgical candidates,” says Goldsmith. “It’s a challenging balance. They need to be well enough to tolerate surgery, but sick enough that it will vastly improve their life.”

For this reason, many of the kids they do operate on have one of a few conditions, including patent ductus arteriosis, atrial septal defect, ventricular septal defect and tetralogy of Fallot.

“The most impressive case this past trip was an 8-year old girl with tetralogy of Fallot, who was about as blue as you can be and still be alive,” says Goldsmith. “She had to be carried into the clinic and could barely walk a step without getting tired. By the end of the trip, she was out playing soccer and dancing. It was really incredible to see that.”

Read more about the Hearts and Minds of Ghana’s experiences on the group’s blog and check out the photo album on Facebook.

Mariam, Stephanie and Isaac, fully recovered from their open-heart surgeries

IQIC: Training clinicians to provide quality care

The IQIC works with low- and middle-income countries to create a culture of safety and quality for care of congenital heart disease to reduce mortality and major complications for these conditions.

The IQIC got its start in 2007, when Kathy Jenkins, MD, MPH, was invited to a meeting of the Global Forum for Humanitarian Medicine in Cardiology and Cardiac Surgery. Jenkins had developed one of the top risk adjustment models, risk adjustment for congenital heart surgery (RACHS), and was asked to give a talk about how to measure outcomes.

At the meeting, Jenkins discovered a common theme: there was no data to work from. “At the time, I was working on multi-center databases and had started to run quality and safety programs for the hospital, so I knew it was possible to collect data,” she says.

Over the next year, Jenkins worked with some of the top non-governmental organizations (NGOs) from the forum to put together a steering committee and start a database that would work in low-resource settings. Five pilot sites were chosen and a database was created.

“That first year, we grew slowly, choosing sites carefully” says Jenkins. “Eventually we opened it up to anyone who wanted to join, and since then it’s grown organically.”

This year, the group has enrolled 64 sites from 25 different countries, including its new foray into Africa, with three sites enrolled there. There are now more than 81,000 surgical cases entered into the database. To date, about 50 clinicians from Boston Children’s have given their time to the program.

Jenkins, left, and Patty Hickey, PhD, MBA, RN, NEA-BC, FAAN, right, present an award to a team in Brazil for their nursing education program

“We can’t help them start a cardiac surgery program, but we can help them get their existing program functioning at a higher level, get more patients safely through the program, or handle more complex cases. That’s the role of our project,” says Jenkins.

The first three key drivers

The IQIC started with three key drivers:

  • safe perioperative practices
  • reduction of surgical site infections and bacterial sepsis
  • team-based practices for nurse empowerment

The group collaborates with sites through monthly webinars that may be watched live or downloaded later, as well as through learning sessions that bring all the teams together. A core team from Boston Children’s and Children’s Heart Link, a partnering NGO, also travel to each of the sites once a year to audit data. Ideally, each trip is staffed by one physician, one nurse and one data collector. These trips also build collaboration and personal connections.

“When we set up the program, we knew we had to do data verification or no one would believe the results,” says Jenkins. “At each site visit, we audit a 10 percent sample of the most important variables, and any group that passes the audit gets put into the aggregate database.”

Beverly Small, RN, with nurses at Mother and Child Health Institute in Belgrade, Serbia

Yearly benchmarking reports allow each site to see how they’re doing and compare their case mix to other centers in the program.

Improving outcomes

The data shows that the program is meeting its goals. Since IQIC’s inception, the risk-adjusted mortality for enrolled sites has improved, as have infection rates.

“It’s not a perfect comparison because centers have joined along the way, but we published a study in Pediatrics based only the sites that have been involved since the beginning that showed the same trend,” says Jenkins.

The group has also published important research, including a paper on outcomes for arterial switch surgery to correct transposition of the great arteries (TGA).

Building on opportunity

To build on these successes, the IQIC recently started two additional modules: a catheterization lab database and a virtual QI course. Both of these topics will be discussed during the next meeting of the Global Forum for Humanitarian Medicine in Cardiology and Cardiac Surgery in April, which many of the core members of the IQIC will be attending.

Jenkins reviews a handover sheet for nursing care with nurses at Star Hospital in Hyderabad, India

Other next steps include developing a course in perfusion, after some of the surgeons noticed the skill was lacking at many of the sites. With a grant from Milagros para Niños, the IQIC has developed an education module written by Greg Matte, CCP, LP, FPP, and will bring clinicians from the Latin American sites to Boston Children’s to review the modules and accompany a perfusionist into the operating room for hands-on learning.

IQIC has also received funding from the Kobren Family Chair for Safety and Quality. Eric Kobren is a former member of the Boston Children’s Board of Trustees and has been very supportive of the IQIC’s work.

Jenkins hopes that the program will continue to expand and grow. “Only about 7 percent of kids in world that need cardiac surgery are able get it,” says Jenkins.  “I’d like to see Boston Children’s, in partnership with others, continue to develop sustainable programs to grow and expand in this area.”

Learn more about the work of the IQIC.