Inconsistent classification of unexplained sudden deaths in infants and children hinders surveillance, prevention and research: recommendations from The 3rd International Congress on Sudden Infant and Child Death

Abstract

This report details the proceedings and conclusions from the 3rd International Congress on Unexplained Deaths in Infants and Children, held November 26–27, 2018 at the Radcliffe Institute at Harvard University. The Congress was motivated by the increasing rejection of the diagnosis Sudden Infant Death Syndrome (SIDS) in the medical examiner community, leading to falsely depressed reported SIDS rates and undermining the validity and reliability of the diagnosis, which remains a leading cause of infant and child mortality. We describe the diagnostic shift away from SIDS and the practical issues contributing to it. The Congress was attended by major figures and opinion leaders in this area from countries significantly engaged in this problem. Four categories (International Classification of Diseases (ICD)-11 categories of MH11, MH12, MH14, PB00-PB0Z) were recommended for classification, and explicit definitions and guidance were provided for death certifiers. SIDS was reframed as unexplained sudden death in infancy or SIDS/MH11 to emphasize that either term signifies the lack of explanation following a rigorous investigation. A distinct category for children over the age of 1 was recommended (MH12). Definitions and exclusions were provided for the alternative categories of accidental asphyxia and undetermined. As recommended, unexplained sudden death in infancy or SIDS on a death certificate will code a unique, trackable entity, accurately reflecting the inability to determine a definitive explanation, while satisfying surveillance needs and reliable identification for research efforts. The conclusions will be submitted to the World Health Organization for inclusion in the upcoming ICD-11.

Bedsharing and Breastfeeding: The Academy of Breastfeeding Medicine Protocol #6, Revision 2019

“…Proxy measure for SIDS: For any international comparisons for the purpose of this protocol, we use a proxy measure for SIDS by adding deaths assigned to these three codes together (R95 + R99 + W75) as a composite measure of unexplained SUDI (or SUID). 57 This is due to our recognition of the diagnostic shift pointed out by Taylor et al 58 and Shapiro-Mendoza et al 59 over the past decade in which some pathologists and medical examiners seem reluctant to use SIDS (R95) because the diagnosis requires the exclusion of any other cause of death. Therefore, the use of codes R99 or W75 is preferred, despite incomplete or minimal evidence that overlaying (accidental smothering) may be the causal factor.…”

Sudden Unexplained Infant Deaths and Day of Life 0

“…2 Still later, when classification practices scattered because of objections about the concept of SIDS and the varied use of alternative terminologies, the composite of sudden unexplained infant death (SUID) came to stand in. 3 In this issue of Pediatrics, big data concur with the pioneering thinkers and draw the demarcation at 1 week. In "Distinct Populations of Sudden Unexpected Infant Death Based on Age," Lavista Ferres et al 4 used elegant, unbiased computational modeling without predetermined age boundaries to determine distinct age-related subgroups in SUID.…”

The multiagency approach to Sudden Unexpected Infant Deaths (SUID): eleven years’ experience in the Tuscany Region

“…For the classification of the cases, infant death certificates were jointly discussed again among the SIDS Center staff and pathologists and the cases re-classified as Unexplained (i.e. SIDS), Undetermined (when the post-mortem was incomplete or incorrectly performed), or Explained (due to illnesses, accidental suffocation or unnatural causes), according to a classification that has recently been proposed in an attempt to standardise the coding criteria at an international level [ 15 ]. Globally, 20 audits were carried out, 11 to classify the “grey-zone” cases and 9 to discuss the causes underlying incorrect management of the procedure.…”