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CHD global outcomes set

New CHD global outcomes set released

The International Consortium for Health Outcomes Measurement (ICHOM) announced the release of a Congenital Heart Disease Standard Set (CHDSS) in late April 2020.

Gerard Martin, M.D., FAAP, FACC, FAHA, cardiologist at Children’s National Hospital, chaired the working group and contributed to the standards’ writing. In ICHOM‘s press release, he noted that, “Having a global set of outcomes that matters most to adult patients and parents of children with congenital heart disease will provide a road map for healthcare professionals and organizations engaged in setting care strategies for this population around the world. I would like to acknowledge the efforts of the Working Group and ICHOM staff for their incredible effort on this project.”

The CHDSS is a minimum core set of standards, comprised of Patient, Parent, and Clinician – Reported Outcome Measures already being collected by most practices in routine clinical care. The CHDSS measures 14 outcomes under the ICHOM framework for comprehensive outcomes measurement. These overarching domains are Overall Health, Social Health, Mental Health, and Physical Health.

Learn more about the CDHSS, the contributors and read the ICHOM press release.

CHD global outcomes set

The CHDSS measures 14 outcomes under the ICHOM overarching domains of Overall Health, Social Health, Mental Health, and Physical Health.

Patients and staff at the Uganda Heart Institute

Lifesaving heart surgeries for RHD complications in Uganda go on despite COVID-19

Patients and staff at the Uganda Heart Institute

Patients and staff at the Uganda Heart Institute for RHD-related heart surgeries in Uganda, March 2020. These patients were originally scheduled as part of the cancelled medical mission, but UHI cardiovascular surgeon successfully managed these cases without the support of the mission doctors from the U.S.

In early March as countries around the globe began to wrestle with how best to tackle the spread of COVID-19, a group of doctors, nurses, researchers and other medical staff from Children’s National Hospital were wrestling with a distinct set of challenges: What to do about the 10 Ugandan children and adults who were currently scheduled for lifesaving heart surgery (and the countless others who would benefit from the continued training of the local heart surgery team) to correct complications of rheumatic heart disease (RHD) during an impending medical mission in the country.

Rheumatic heart disease impacts over 39 million people globally and causes nearly 300,000 deaths per year. RHD is the result of frequent, untreated streptococcal throat infections in childhood that ultimately cause the body’s immune system to repeatedly damage heart valves. It is completely preventable, yet the majority of the world’s children still live in impoverished and overcrowded conditions that predispose them to RHD. Most patients present with advanced valvular heart disease. For example, in Uganda, an RHD registry includes over 600 children with clinical RHD, of which nearly 40% die within four years and the median survival time from enrollment in the registry is only nine months. For these patients, heart surgery is the only viable solution for long-term survival and normal quality of life.

Patricia: 9-year-old from Gulu

Patricia: 9-year-old from Gulu (northern Uganda), had mitral valve replacement and was doing well on a recent follow-up visit at her home.

The scheduled trip from Washington was part of a nearly 20-year partnership** between doctors, nurses, researchers and other medical staff in the United States, including Craig Sable, M.D., associate chief of cardiology, and and Pranava Sinha, M.D.,pediatric cardiovascular surgeon, at Children’s National Hospital in Washington, D.C., and the Uganda Heart Institute in Kampala, Uganda. The partnership aims to tackle RHD head-on. It provides surgical skill transfer, allows for treatment of more complex patients, and increases sustainable surgical capacity for Uganda’s RHD patients over time. As a result, over the last 15 years more than 1,000 children have received lifesaving heart surgery in Uganda, with the Uganda Heart Institute (UHI) performing one to two heart valve surgeries every two weeks over the last few years.

Jackline: 12-year-old from Gulu

Jackline: 12-year-old from Gulu, had mitral valve repair and aortic valve replacement. Jackline and Patricia were diagnosed through one of our research programs and benefit from our novel telehealth program, which helps connect patients from remote parts of Uganda to specialists at UHI.

COVID-19 was changing the current plan, however. Travel between countries was limited, and the team from the U.S. wouldn’t have been permitted to leave the U.S. and return according to schedule. The trip, and the support teams who were scheduled to arrive to help with the surgeries, were cancelled. The U.S. team members who had already arrived in Uganda were sent home after helping their UHI colleagues set up and prepare for the surgeries as much as possible. Knowing that patients and families were counting on the surgery mission to go forward after waiting for months or years to have surgery for heart valve disease, UHI decided not to cancel the majority of the surgeries. Instead, for the first time, they planned and successfully completed five valve-related cases in a single week – several of them quite complex. The cardiologists and cardiac surgeons from Children’s National who were supposed to be in-country for these procedures were forced to limit their in person assistance to the set-up activities the week prior to surgery and telehealth consult during the procedures.

“It was hard not to be able to stay  and work with the UHI team to help these families,” says Dr. Sable. “But we are so proud of the UHI team for meeting this challenge on their own. We knew they had the skills to perform at this volume and complexity. It’s a proud moment to see the team accomplish this major milestone, and to see the patients they cared for thrive.”

The patients are the most important outcome: The five who had successful open-heart surgery are all doing well, either on their way to recovery or already discharged to their communities, where they will, for the first time in memory, be able to play, exercise and go to school or work.

Longer term, this success demonstrates the UHI medical team’s ability to manage greater surgical capacity even when surgical missions from the U.S. resume. The partnership’s goal is to complete at least 1,000 annual operations (both pediatric and adult), with the majority being performed by the local team. Having this capacity available will mean the difference between life and death for many children and adults who have RHD in Uganda and the surrounding countries.

**This work is supported by the Edwards Life Sciences/Thoracic Surgery Foundation, the Emirates Airline Foundation, Samaritan’s Purse Children’s Heart Project and Gift of Life International.

BPA analogues may be less likely to disrupt heart rhythm

Some chemical alternatives to plastic bisphenol-a (BPA), which is still commonly used in medical settings such as operating rooms and intensive care units, may be less disruptive to heart electrical function than BPA,

A poster at the AHA Scientific Sessions suggests bisphenol-s (BPS) and bisphenol-f (BPF) may have less impact on heart function than bisphenol-a (BPA).

Some chemical alternatives to plastic bisphenol-a (BPA), which is still commonly used in medical settings such as operating rooms and intensive care units, may be less disruptive to heart electrical function than BPA, according to a pre-clinical study that explored how the structural analogues bisphenol-s (BPS) and bisphenol-f (BPF) interact with the chemical and electrical functions of heart cells.

The findings suggest that in terms of toxicity for heart function, these chemicals that are similar in structure to BPA may actually be safer for medically fragile heart cells, such as those in children with congenital heart disease. Previous research has found a high likelihood that BPA exposure may impact the heart’s electrical conductivity and disrupt heart rhythm, and patients are often exposed to the plastic via clinical equipment found in intensive care and in the operating room.

“There are still many questions that need to be answered about the safety and efficacy of using chemicals that look and act like BPA in medical settings, especially in terms of their potential contribution to endocrine disruption,” says Nikki Gillum Posnack, Ph.D., the poster’s senior author and a principal investigator in the Sheikh Zayed Institute for Pediatric Surgical Innovation at Children’s National Hospital. “What we can say is that, in this initial pre-clinical investigation, it appears that these structural analogues have less of an impact on the electrical activity within the heart and therefore, may be less likely to contribute to dysrhythmias.”

Future studies will seek to quantify the risk that these alternative chemicals pose in vulnerable populations, including pediatric cardiology and cardiac surgery patients. Since pediatric patients’ hearts are still growing and developing, the interactions may be different than what was seen in this pilot study.

Learn more the impacts of exposure to plastics such as bisphenol-A and plasticizers such as DEHP and MEHP that are commonly used in medical devices:

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Bisphenol-a Analogues May Be Safer Alternatives For Plastic Medical Products
Rafael Jaimes, Damon McCullough, Luther M Swift, Marissa Reilly, Morgan Burke, Jiansong Sheng, Javier Saiz, Nikki G Posnack
Poster Presentation by senior author Nikki G Posnack
CH.APS.01 – Translational Research in Congenital Heart Disease
AHA Scientific Sessions
November 16, 2019
1:30 p.m. – 2:00 p.m.