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Death certificates weren't especially accurate for children who died suddenly and unexpectedly, a study found, with many stating causes that weren't supportable on further inspection.

Forensic pathologists performing a masked review of 100 sudden deaths in children (age 11 months to 18 years) determined that 77 could not be explained -- up from the 57 that had been originally deemed unexplained by medical examiner and coroner offices, according to a group led by Laura Crandall, MA, of NYU Grossman School of Medicine, New York City. Their study was published online in .

Sudden unexplained deaths in children (SUDC) "is an extraordinarily underfunded and understudied problem given its devastating consequences," Crandall's team emphasized.

"In this current environment, there's no way to know how many children we know died from completely unexplained deaths vs deaths that would be explained if they went through a rigorous process," commented Richard Goldstein, MD, of Boston Children's Hospital, in an interview.

Unlike sudden infant deaths, there is no formal SUDC diagnostic category for deaths among children older than 1 year, which may bias some medical examiners and coroners to elevate minor pathological findings (such as bronchitis) as cause of death, the authors suggested.

Such bias may arise from the original death investigators trying "to avoid the limbo of an unexplained certification that stokes fear regarding potential risk to relatives, suggests an incomplete investigation, or implies information was overlooked," Crandall and colleagues said.

The CDC estimates that SUDC is the fifth leading category of death in children age 1-4 years, with 392 deaths in 2018. Yet it may actually be the fourth leading category if such deaths are more common than what death certificates say, according to Crandall and colleagues.

It's important to figure out the correct etiology of sudden deaths, as some are caused by rare cardiac syndromes that may be genetic in nature and have implications for surviving family members, said Robert Campbell, MD, of Children's Healthcare of Atlanta and Emory University School of Medicine, who was not involved with the study.

Crandall and colleagues based their study on the first 100 consecutive cases in the SUDC Registry and Research Collaborative, which was started in 2014. Cases had been posthumously referred by certifiers or parents who had felt additional investigation was warranted after a child's death.

Mean age at death was 32.1 months. Boys accounted for 58% of the cohort and white children 82%.

Original death investigations in the study were of variable quality: all cases were autopsied, but only 3% had genetic testing performed.

"A scene investigation, while critical -- especially in sleep-related pediatric death investigations -- was considered inadequate in nearly a quarter of cases. Two organs implicated in sudden death -- the brain and the heart -- each had inadequate examinations in more than 20% of cases," Crandall and colleagues complained.

"What SUDC has in common with SIDS [sudden infant death syndrome] is often the diagnosis has as much to do with the resources available when the autopsy is performed and the specialized pediatric expertise available as they do with the actual characterization of disease," according to Goldstein.

He cited the "dire shortage" of medical examiners in the country and the fact that many autopsy programs remain underfunded.

Moreover, most first-line death investigators may not be analyzing autopsies with an eye out for rare cardiac syndromes that can cause sudden cardiac arrest, Campbell suggested, citing long QT syndrome and catecholaminergic polymorphic ventricular tachycardia as two electrical heart disorders that are generally autopsy-negative and require molecular autopsy on specific tissue samples to ascertain.

For the study, 13 forensic pathologists performed a systematic review of medical records, death scene investigation, autopsy findings, ancillary tests, and genetic data. Two masked forensic pathologists were assigned to each case and asked to determine cause of death.

These reviewers agreed in 83% of cases. Remaining cases were subject to panel adjudication due to differing opinion.

Ultimately, the masked forensic pathologists disagreed with the original cause of death in 40% of cases.

"Although in some cases there is no absolute correct answer, given that interpretation and judgment are involved, we sought a COD [cause of death] determination as accurate as possible and accept that certifications are medical opinions," Crandall and colleagues said.

Potential referral bias was a major limitation of the study, they acknowledged, as the cases included may not be representative of the general population.

Goldstein noted that there was only one African-American child included in the study, even though these children are disproportionately affected by SUDC compared with other races.

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