22 Mar Understanding the Incidence of Sudden Unexplained Death In Child (SUDC)
Understanding the incidence (aka frequency) is dependent on accurate surveillance. However, due to the variations in death investigation practices across the United States and in other countries, we are limited in our ability to understand the true magnitude of SUDC. At this time, we have accurate surveillance of deaths finalized without explanation, but we can not estimate the number of deaths that are finalized with a specific cause of death that may be highly speculative or inaccurate.
Table 1. R96-99 By Age of 1-18yo, 1999-2017 (Unexplained Sudden Child Deaths and Undetermined Deaths)
Centers for Disease Control and Prevention, National Center for Health Statistics. Multiple Cause of Death 1999-2017 on CDC WONDER Online Database, released December, 2018. Data are from the Multiple Cause of Death Files, 1999-2017, as compiled from data provided by the 57 vital statistics jurisdictions through the Vital Statistics Cooperative Program. Accessed at http://wonder.cdc.gov/mcd-icd10.html on Feb 13, 2019 7:05:28 PM
When death certificates are analyzed nationally, the cause of death description is translated into a code. These codes are recognized internationally and developed by the World Health Organization (WHO). The rules around interpreting the words on the death certificate into a code are very specific and sometimes lead to misinterpretation. Including risk factors or medical history into the cause of death may affect the coding and classification of that death. For example, an “unexplained death with a history of febrile seizure”, will be coded as a death due to a febrile seizure.
The codes for an unexplained death or a cause of death that could not be determined are associated with R96-R99. According to the U.S. Centers for Disease Control, in the U.S. annually, approximately 400 children between the ages of 12 months and 18 years die suddenly without a clear cause of death determined. The majority of these children (62% in 2017) were toddlers ages 1 – 4 years of age. (Table 1)
Ireland reported the incidence SUDC doubling, however rates in the U.S. have been more stagnant over the last 18 years. (Table 2)
Table 2. U.S. R96-R99 Incidence, by year, among 1-18 year olds
Centers for Disease Control and Prevention, National Center for Health Statistics. Multiple Cause of Death 1999-2017 on CDC WONDER Online Database, released December, 2018. Data are from the Multiple Cause of Death Files, 1999-2017, as compiled from data provided by the 57 vital statistics jurisdictions through the Vital Statistics Cooperative Program. Accessed at http://wonder.cdc.gov/mcd-icd10.html on Feb 13, 2019 7:05:28 PM
In order to understand the true incidence of SUDC, we need to have systems that coordinate standardized investigative practices and certifications. In 2017, the SUDC Foundation awarded a grant to the National Association of Medical Examiners (NAME) to work collaboratively with the American Academy of Pediatrics (AAP) to investigate and establish national practice guidelines surrounding the investigations of sudden unexpected deaths in infants and young children and determine research needs and the sensitive care of families affected. The compilation of this work will be published later this year.
References:
McGarvey C, O’Regan M, Cryan J, Treacy A, Hamilton K, Devaney D and Matthews T. Sudden unexplained death in childhood (1–4 years) in Ireland: an epidemiological profile and comparison with SIDS Arch Dis Child (2012)