The Perplexing State of Sleep-Related Infant Death – Emerging Data, New Trends, and Current Approaches
Author: Malka Main
This fall, new data will be available on how families implement the American Academy of Pediatrics (AAP) infant safe sleep recommendations and the type of safe sleep education they receive from health care providers. This may help public health address the long-standing plateau in sleep-related infant deaths in the United States.
|Rates of sudden unexpected infant death (SUID) stabilized between 1998 and 2015. SOURCE: CDC/NCHS, National Vital Statistics System, Compressed Mortality File.|
The overall rates of sudden unexpected infant death (SUID), sometimes called sudden unexpected death in infancy (SUDI), took a steep dive in the 1990s. This was shortly after the AAP Taskforce released new recommendations that infants be placed to sleep on their backs, and the National Institute of Child Health and Human Development (NICHD) launched the Back to Sleep Campaign®.
But those SUID rates have been relatively stable since 1998. While all racial and ethnic groups experienced decreases in SUID since the 1990s, the disparity between groups remains the same1 and the rates vary widely across states- in Region X, Alaska has the highest and Washington the lowest. 2
WHAT IS SUDDEN UNEXPECTED INFANT DEATH? (SUID vs SUDI vs SIDS)
SUID is an umbrella term that describes the death of an infant before the age one - with no immediately obvious cause. Subtypes include sudden infant death syndrome (SIDS), accidental suffocation and strangulation in bed (ASSB), and unknown causes. The SUID classification system is complex. There is no standardized process for infant death scene investigation, no biological markers that differentiate between subtypes, and while there are universal definitions of each subtype, not all coroners and medical examiners use them.3
Sudden Unexpected Infant Death by Race/Ethnicity, 2011-2014
|SOURCE: CDC/NCHS, National Vital Statistics System, Compressed Mortality File.|
But many of the risk factors for SUID are similar and these deaths often happen during sleep or in the infant’s sleep area. The AAP Task Force policy on infant safe sleep continually evolves in response to new evidence. In 2011, the AAP expanded recommendations to include regular prenatal care, breastfeeding, and vaccinations, and emphasized primary sleep-related practices acknowledged in earlier policy statements: back sleep position, a firm sleep surface, room-sharing without bed-sharing, and no soft bedding. A year later, NICHD rebranded the Back to Sleep Campaign® as Safe to Sleep® to support new, evidence-based research and reinforce that a safe sleep environment can reduce the risk of sudden unexpected infant death.
But even after this national expansion on the concept of infant safe sleep there was no significant change in overall SUID rates. Public health practitioners tasked with addressing sleep-related infant death face a lack of data. Are caregivers receiving the most up-to-date safe sleep education from their health care providers? How thoroughly do they implement these safe sleep practices?
HOW THE MATERNAL AND CHILD HEALTH BUREAU CLOSED THE GAP IN SAFE SLEEP DATA
The Pregnancy Risk Monitoring System (PRAMS), a national annual survey conducted by the Centers for Disease Control and Prevention (CDC), collects women’s self-reported experiences and behaviors before, during, and after pregnancy. Until 2016, the only infant sleep data collected from all states was about sleeping position: do you lay your baby down on their (A) side, (B) back, or (C) stomach? Questions about bed sharing, soft objects, and loose blankets were state opt-in and only a minority of states did so.
“It was a real gap in the field,” explains Ashley Hirai, an epidemiologist with the Maternal and Child Health Bureau (MCHB). Hirai is part of the workgroup who recently transformed the MCHB’s Title V Block Grant that supports state activities to improve maternal and child health. The workgroup added the safe sleep category to a revised list of National Performance Measures but had only state-level data on infant position.
MCHB provided funding to the CDC to add 8 new questions to PRAMS that address the safe infant sleep environment, and one that identifies the types of safe sleep education mothers receive from health care workers. Responses to new PRAMS survey questions can be analyzed to identify differences in caregiver sleep practice and relationships with health care providers within different populations and help guide future prevention efforts.
The MCHB workgroup updated the guidance for grant recipients this year to reflect the newly available data. Beginning July 2018, states that focus on safe sleep activities will report performance measure data for two new indicators beyond the percentage of infants placed to sleep on their backs: 1) the percentage placed to sleep on a separate approved surface, and 2) the percentage placed to sleep without soft objects or loose bedding.
“We know states have already been implementing the larger set of AAP’s recommendations,” says Hirai. “This is really just honoring what states are doing and hopefully understanding gaps to improve the safe sleep environment more broadly.”
NEW TRENDS IN SIDS/SUID INTERVENTIONS ACKNOWLEDGE NUANCE AND ENCOURAGE CONVERSATION
- AAP’s 2016 infant safe sleep recommendations recognized that not all caregivers will fully adhere to the guidelines, particularly around bed sharing, a practice that has increased over the past 20 years.3 The guidelines encourage health care providers to have open, nonjudgmental conversations with families about realistic risk reduction and informed decision-making. The AAP has not backtracked on its recommendation to avoid bed sharing but it has noted more and less risky practices.
- Alaska’s new culturally-sensitive safe sleep training includes many of these risk reduction modifications. The curriculum is designed to unify the safe sleep message caregivers receive from pediatricians, hospital staff, home health nurses, and social service case workers.
- Building on Campaigns with Conversations is a learning module for practitioners that promotes an individualized public health approach to safe sleep promotion.4
MANY CURRENT SAFE SLEEP INTERVENTIONS TAKE EITHER A COMPREHENSIVE OR FOCUSED APPROACH TO REDUCE SIDS/SUID
- Sisters United in Arkansas is an emerging best practice in safe sleep. African American Sororities partner with the state department to perform community outreach training and increase public awareness of infant mortality in the African American community.
- The Safe Sleep Project in Tenessee, a member of the Safe Sleep Collaborative Improvement and Innovation Network, reduced SUID rates by 19% through a public awareness campaign, partnerships with WIC and Home Visiting, and provider and patient education at all birthing hospitals.5
- The Maternal and Child Health Section at Idaho Department of Health is working to reduce SUID through multiple channels including statewide recommendations informed by local mortality data, and partnerships with hospitals and emergency personnel to promote the ABCs of Safe Sleep.
- Park SE, Erck Lambert AB, Shapiro-Mendoza CK. Racial and Ethnic Trends in Sudden Unexpected Infant Deaths: United States, 1995–2013. Pediatrics. June 2017, Vo 139/ Issue 6 http://pediatrics.aappublications.org/content/139/6/e20163844
- Erck Lambert AB, Parks SE, Shapiro-Mendoza CK. National and State Trends in Sudden Unexpected Infant Death: 1990–2015. Pediatrics. 2018;141(3):e20173519 http://pediatrics.aappublications.org/content/pediatrics/early/2018/02/09/peds.2017-3519.full.pdf
- Shapiro-Mendoza CK, Camperlengo L, Ludvigsen R, et al.Classification System for the Sudden Unexpected Infant Death Case Registry and its Application. Pediatrics Jul 2014, 134 (1) e210-e219; DOI: 10.1542/peds.2014-0180
- Bronheim S. (2017). Building on campaigns with conversations: An individualized approach to helping families embrace safe sleep and breastfeeding. Washington, DC: National Center for Education in Maternal and Child Health
- Hirai AH, Sappenfield WM, Ghandour RM, et al. US Department of Health and Human Services. The Collaborative Improvement and Innovation Network (CoIIN) to Reduce Infant Mortality: An Outcome Evaluation From the US South, 2011 to 2014, American Journal of Public Health 108, no. 6 (June 1, 2018): pp. 815-821. DOI: 10.2105/AJPH.2018.304371