Developing Registries, Guidelines for COVID-19

Published August 28, 2020

Pediatrics researchers from the Jacobs School of Medicine and Biomedical Sciences have called attention to key issues in health care that the COVID-19 pandemic has brought to light, and they have recommended guidelines for evaluating and treating children infected with COVID-19.

“Apprehension about seeking care for non-COVID diseases, especially heart attacks and other cardiovascular problems, is leading to potentially lethal delays in seeking care, which will reverberate throughout health care systems for the foreseeable future. ”
A. Conger Goodyear Professor and Chair of pediatrics
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Their work – a paper and two editorials — has been published in Progress in Pediatric Cardiology.

AHA Invites Lipshultz to Chair Committee

As a result of the recommendations, the American Heart Association (AHA) has requested that one of the authors, Steven E. Lipshultz, MD, chair a committee to develop a scientific statement on the management and treatment of children with cardiomyopathies, including COVID-19 and other viral and inflammatory diseases. 

Lipshultz, the A. Conger Goodyear Professor and Chair of pediatrics, is credited with having helped establish the field of pediatric cardio-oncology and has been principal investigator of several landmark National Institutes of Health (NIH) studies on the causes and treatment of cardiomyopathy in children. 

The Children’s Cardiomyopathy Foundation is also working with Lipshultz to fund a national registry of children with COVID-19 and these cardiovascular complications to augment his current NIH funding of the Pediatric Cardiomyopathy Registry.

Consequences of Avoiding Care in Pandemic

The paper — titled “Disruption of Healthcare: Will the COVID Pandemic Worsen Non-COVID Outcomes and Disease Outbreaks?” — discusses the far-reaching effects that the global pandemic is having on all aspects of health care.

Citing fear and lack of trust in health care institutions as patients with other conditions avoid treatment because of COVID-19, as well as dysfunction in the ways that health care is paid for in the U.S., Lipshultz and co-authors describe in the paper the health care challenges that the COVID-19 pandemic has created.

“Apprehension about seeking care for non-COVID diseases, especially heart attacks and other cardiovascular problems, is leading to potentially lethal delays in seeking care, which will reverberate throughout health care systems for the foreseeable future,” says Lipshultz, corresponding author.

The authors note that a critical factor in boosting confidence in the system’s ability to care for patients with all diseases is accurate and effective communication with the public about risks from the novel coronavirus as well as non-COVID-19 diseases.

Effective Risk Communication is Essential

The paper states: “Uncertainty about the course and severity of the pandemic and the potential of a vaccine remains high; thus, effective risk communication is essential to ensure widespread adoption of evidence-based public health recommendations.”

The paper mentions, as an example, that in 2009, public acceptance of the H1N1 flu vaccine happened as a result of “access to clear and accurate information and confidence in the vaccine, which was enhanced when President Obama’s daughters were immunized.”

But the trust that Americans now have in the federal government to “do the right thing” has plummeted to 17 percent, according to research cited in the paper, and official actions during the pandemic have further eroded public confidence.

The authors note that reporting of accurate data about the incidence of the disease and which populations are more at risk for COVID-19 and other diseases is also a factor that impacts public trust and perception.

The paper states: “Disease incidence and progression for many conditions can vary by ethnicity, and COVID-19 may be no different. Even in the U.S., needed information about infections, hospital admissions and deaths is not readily available in some regions as a result of economic concerns and political pressures.”

Co-Authors From UB, Wayne State, More

Along with Lipshultz, who is president of UBMD Pediatrics, UB co-authors on the paper include:

Additional co-authors are Paul Barach, MD, of Wayne State University; Stacy D. Fisher, MD, of the University of Maryland; as well as M. Jacob Adams, MD, and Patrick Brophy, MD, both of the University of Rochester.

Urging Establishment of Patient Registries

In the editorial — “Rethinking COVID-19 in Children: Lessons Learned from Pediatric Viral and Inflammatory Cardiovascular Diseases” — Lipshultz notes that more readily available data on COVID-19 patients, especially the recent emergence of the Kawasaki-like syndrome called multisystem inflammatory syndrome in children (MIS-C), will be especially critical in determining how best to treat these children.

He urges the establishment of patient registries, similar to what he and colleagues have done in the field of pediatric cardiomyopathy.

Such registries can help establish new classification systems and identify differences in the course of a disease and outcomes. In pediatric cardiomyopathy, these registries of patient data have cut in half the incidence of the failure of certain medical interventions.

Multidisciplinary Approach to MIS-C

In the other editorial — “COVID-19 Associated Multisystem Inflammatory Syndrome in Children (MIS-C) Guidelines: A Western New York Approach”Mark D. Hicar, MD, PhD, and colleagues proposed new guidelines for evaluating children with COVID-19 who exhibit symptoms of MIS-C, which can have devastating effects on the cardiovascular system and other organs.

Hicar is an assistant professor of pediatrics and a physician with UBMD Pediatrics.

Because of the complexity of the issues involved with this condition, Lipshultz proposes that a multidisciplinary team should address such patients as soon as possible. And because of the possibility of rapid deterioration after presenting with initially mild symptoms, he strongly recommends follow-up within several days if a child with symptoms that may indicate MIS-C is discharged from the emergency department. He also proposes that providers be aware that transfer to a pediatric intensive care unit or higher level of hospital care may also be warranted.

“Decades of research studying cardiovascular diseases in children related to viral illnesses and their therapies has provided us with important lessons that we believe may be relevant to understanding the cardiovascular manifestations of COVID-19 in children,” Lipshultz says.