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

Torleiv O Rognum,Henry F Krous,Peter S Blair,Carrie K Shapiro-Mendoza,Mary Ann Sens,Rachel Y Moon,Richard D Goldstein

doi:10.1007/s12024-019-00156-9

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.

Highlights

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 term Sudden Infant Death Syndrome (SIDS) is endorsed by the World Health Organization (WHO) and is broadly used by physicians, researchers, and the public, it is increasingly avoided by forensic pathologists in many jurisdictions who determine cause and certify sudden deaths in infants [1]
Once deaths have been certified by pathologists, surveillance requires an interface between death certificates and international classification of diseases (ICD) codes and coding algorithms, a process that sometimes leads to an entered diagnostic code that is different than the certifier’s intention

Summary

Notes for Death Certifiers

Unexplained sudden death in infancy or Sudden Infant Sudden Infant Death Syndrome a. There cannot be a reasonable competing cause of death after a complete autopsy with ancillary testing, examination of the death scene (with a doll reenactment when appropriate), and review of the clinical history f: In infants, bed/sleep surface sharing, soft bedding, or prone sleep, without adequate evidence for airway obstruction or chest wall compression, are insufficient to certify a death as due to asphyxia These deaths may be more appropriately certified as unexplained sudden death or SIDS. 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. These recommendations will be immediately proposed to the WHO for the ICD-11. The recommendations will be disseminated among international forensic pathology and pediatric organizations

Conclusions

Compliance with ethical standards