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SAN FRANCISCO -- Unlike their peers who treat adults, pediatric electrophysiologists face unique challenges of ethics and communication when working with children and their families.

Clinical decision-making can be hampered by a scientific literature that is currently modest at best and evolving, and by potential disagreement between parent and adolescent about putting in an implantable cardioverter-defibrillator (ICD). The pediatric electrophysiologist therefore may have to work harder to get patients on board with what he or she thinks is best for them.

"We fill the role of the healthcare expert, educator, and salesperson," said Peter Fischbach, MD, of Children's Healthcare of Atlanta, who called medicine a "team sport event" in which the electrophysiologist has to weigh beneficence against respect for the child's autonomy.

"Adolescence is a complex and fluid life-stage. If there is no buy-in from the adolescent, you have lost the war," Fischbach said during a session at the Heart Rhythm Society (HRS) annual meeting.

"If everyone on that team is not moving toward a shared goal -- moving in the same direction at all times -- the team falls apart and nothing good happens. The team is the adolescent, the physician, the parent. Nobody is the dominant member. We need to engage all parties on the team, and sell the team on teamwork. If anybody decides they're going rogue, that's a problem," he said.

Admittedly, however, the "science changes all the time," Fischbach said. "What is working today may not be working tomorrow."

This is evident in the case of ICDs for primary prevention.

Guidelines that made class I recommendations for ICDs in people with heart failure and ejection fractions under 35% had been extrapolated in clinical practice to the less well-studied pediatric population. Yet size is an important consideration in small children, as is the long-term impact of an implanted device.

Moreover, children have a relatively much lower risk of sudden cardiac death (SCD) than adults, are more heterogeneous in anatomy and pathology, and unlike a 60-year-old, are less likely to have failing organ systems, according to HRS presenter David Bradley, MD, of at University of Michigan in Ann Arbor.

"The rarity of pediatric conditions means that level of evidence for their treatments will inevitably be lower," Bradley said. "Even compelling adult evidence may not inform pediatric decision-making."

suggests that late gadolinium enhancement is helpful for determining which individuals with nonischemic dilated cardiomyopathy (NIDCM) are best suited for such a device, according to Bradley.

Ejection fraction is officially no longer the magic number that indicates an ICD. The Pediatric and Congenital Electrophysiology Society incorporated this into . "In pediatric patients with NIDCM, primary prevention ICD implantation for left ventricular ejection fraction (LVEF) ≤">≤35%, in the absence of other risk factors, is not clearly supported by published data," the guideline authors wrote.

Pediatric electrophysiologists have also changed practice drastically for their young athletes. Nowadays, kids can play Division 1 sports taking a beta-blocker, a far cry from the hard sports ban and recommendation for ICD of years past, Fischbach observed.

Yet so much changing science and guidelines can give children and their families the "impression that we don't know what we're doing," he said. "Look no further than the CDC during the pandemic. There's a lot of distrust in that organization by a large part of the population."

Trust may be hard to earn when children survive a sudden cardiac arrest, only for clinicians to fail to identify the etiology behind it.

Certainly, some sudden cardiac arrests have no explanation given the limited science -- but there is a problem of inadequate testing and phenotyping, complained Shubhayan Sanatani, MD, of BC Children's Hospital in Vancouver.

"We're pretty good at phenotyping but we get lazy. Surgeons say they've got a spot for a defibrillator implant and we rush. The kid's brain is not 100%, but do we want to send them back to the rural town [without an ICD]?" Sanatani said. "We have to really push for the phenotype ... We know in 10% of cases, our diagnosis is going to change. Our management is going to change."

He said that for now, clinicians should aim to program devices appropriately for pediatric patients and collaborate in the long-term with adult programs and professionals in other disciplines.

Starting a registry in pediatric patients may be good idea, according to Sanatani.

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