Despite the success of safe sleep campaigns and the progress in understanding risk factors, the rate of reduction in the cases of sudden infant death syndrome has now slowed and it remains a leading cause of postneonatal mortality in many developed countries. Strategic action is needed to tackle this problem and it is now vital to identify how the sudden infant death research community may best target its efforts. The Global Action and Prioritization of Sudden Infant Death Project was an international consensus process that aimed to define and direct future research by investigating the priorities of expert and lay members of the sudden unexpected infant death (SUID) community across countries. The aim was to identify which areas of research should be prioritized to reduce the number of SUID deaths globally. Scientific researchers, clinicians, counselors, educators, and SUID parents from 25 countries took part across 2 online surveys to identify potential research priorities. Workshops subsequently took place in the United Kingdom, United States, and Australia to reach consensus and 10 priority areas for research were established. Three main themes among the priorities emerged: (1) a better understanding of mechanisms underlying SUID, (2) ensuring best practice in data collection, management and sharing, and (3) a better understanding of target populations and more effective communication of risk. SUID is a global problem and this project provides the international SUID community with a list of shared research priorities to more effectively work toward explaining and reducing the number of sudden infant deaths.
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August 2017
Special Article|
August 01 2017
Research Priorities in Sudden Unexpected Infant Death: An International Consensus
Fern R. Hauck, MD;
Fern R. Hauck, MD
aDepartment of Family Medicine, University of Virginia School of Medicine, Charlottesville, Virginia;
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Betty L. McEntire, PhD;
Betty L. McEntire, PhD
bAmerican SIDS Institute, Naples, Florida;
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Leanne K. Raven, MNS;
Leanne K. Raven, MNS
cFaculty of Science, Health and Engineering, University of the Sunshine Coast, Sippy Downs, Queensland, Australia;
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Francine L. Bates, BA (Hons);
dThe Lullaby Trust, London, United Kingdom;
Address correspondence to Francine L. Bates, BA (Hons), The Lullaby Trust, 11 Belgrave Rd, London SW1V 1RB, United Kingdom. E-mail: [email protected]
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Lucy A. Lyus, MA (Cantab);
Lucy A. Lyus, MA (Cantab)
dThe Lullaby Trust, London, United Kingdom;
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Alexis M. Willett, BA (Hons);
Alexis M. Willett, BA (Hons)
ePunch Consulting, Cambridge, United Kingdom; and
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Peter S. Blair, BSc (Hons)
Peter S. Blair, BSc (Hons)
fSchool of Social and Community Medicine, University of Bristol, Bristol, United Kingdom
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Address correspondence to Francine L. Bates, BA (Hons), The Lullaby Trust, 11 Belgrave Rd, London SW1V 1RB, United Kingdom. E-mail: [email protected]
POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.
Pediatrics (2017) 140 (2): e20163514.
Article history
Accepted:
May 01 2017
Citation
Fern R. Hauck, Betty L. McEntire, Leanne K. Raven, Francine L. Bates, Lucy A. Lyus, Alexis M. Willett, Peter S. Blair; Research Priorities in Sudden Unexpected Infant Death: An International Consensus. Pediatrics August 2017; 140 (2): e20163514. 10.1542/peds.2016-3514
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Comments
RE: Research Priorities in Sudden Unexpected Infant Death: An International Consensus
I serve as a reviewer for Pediatrics, most frequently reviewing articles concerning Sudden Unexplained Infant Deaths (SUID). I can see that the current paradigm categorizes deaths in the parents’ bed as accidental suffocation/strangulation. As there are as yet no markers for SIDS and no pathologic findings to distinguish deaths with or without bedsharing, this remains a politico-legal determination rather than a medical one. This categorization is not accepted by all, but I’m afraid that until there are biological markers to distinguish them, this will remain the situation.
There was a time, before SIDS was recognized, when all unexplained infant deaths were ascribed to suffocation and strangulation. The introduction of the SIDS diagnosis ameliorated the feelings of guilt and the grief of losing an infant. We have now in part returned to those earlier times.
A modest proposal. Rather that categorize the death of infants found in the parental bed as accidental suffocation/strangulation, we could establish new categories – SIDS without bedsharing and SIDS while bedsharing. This would continue to allow a distinction for epidemiologic and research purposes, while removing the stigma of fault from the parents. I believe that unless there is irrefutable evidence of responsibility, it would be cruel to assign blame to parents already suffering the death of a child. Until more is known of the pathophysiology and chain of events leading to SUID, this would be a more humane way to treat this issue.
RE: : “Research Priorities in Sudden Unexpected Infant Death: An International Consensus,” by Hauck et al.
Karl A. Bettelheim a, PhD, FRCPath, Paul N. Goldwaterb, FRACP, FRCPA
In the recent Article entitled: “Research Priorities in Sudden Unexpected Infant Death: An International Consensus,” by Hauck et al. the authors describe in detail an extended international discussion on SIDS: sudden infant death syndrome and SUID: sudden unexpected infant death. In the introduction we are pleased to note that the authors discussion states that: ”Death may be explained or unexplained. When a cause can be found, the most common diagnoses are infection, cardiovascular disorders, metabolic or genetic disorders, and asphyxia, although this last diagnosis is often based on circumstantial evidence.” We are concerned that this is the only time in this paper and that this is the only occasion that the word “Infection” is used. We have discussed at length the importance of infection1-4 and been able to show how it links with the risk factors, which have been extensively discussed by SIDS epidemiologists such as the infant’s position, bed sharing, details of the cot and parental smoking. We have also developed a mouse model for SIDS,5 showing that infection of mice with a SIDS-derived Escherichia coli could cause a SIDS-like death in the infected newborn pups.
Thus, we consider the authors’ statement, that “Given limited resources internationally, it is vital to identify how the SUID research community should best direct its efforts.” We also fully agree with the authors’ described priorities, especially Priority 1, 5, and 9 which state:
Priority 1: Studying mechanisms leading to death and how they interact with environmental risk factors;
Priority 5: Identifying specific biomarkers to assist pathologists in determining the cause of death;
Priority 9: Better understanding of the practice of sharing any sleep surface with an infant, notably how it interacts with other factors to make it more or less risky.
We consider that the investigation of the role of infection, together with basic pathological findings (which are a clue in themselves to underlying infection)4 should be given a higher priority.
References
1. Bettelheim KA, Goldwater PN. Escherichia coli and sudden infant death
syndrome. Frontiers in Immunology. 2015; 6:Article 343.
2. Bettelheim KA, Goldwater PN. RE: Overall Postneonatal Mortality and
Rates of SIDS. Pediatrics. 2016 electronic letter <http://pediatrics.aappublications.org/content/137/1/1.28>
3. Goldwater PN, Bettelheim KA. Re: Bed sharing when parents do not
smoke: is there a risk of SIDS? An individual level analysis of five major case–control studies. BMJ Open Access Research; 2013. http://bmjopen.bmj.com/content/3/5/e002299/reply#bmjopen_el_7003
4. Goldwater PN. Infection: the neglected paradigm in SIDS research.
Archives of Disease in Childhood. 2017;102:767–772. Doi: 10.1136/archdischild-2016-312327.
5. Bettelheim KA, Luke RKJ, Johnston N, Pearce JL, Goldwater PN. A
Possible Murine Model for Investigation of Pathogenesis of Sudden Infant Death Syndrome. Current Microbiology. 2012; 64(3):276-282.
Addresses:
Doctor Karl A Bettelheim
Retired from
Department of Microbiology and Immunology,
University of Melbourne,
Parkville
Victoria 3052
Australia
Email: [email protected]
Corresponding author:
Professor Paul N Goldwater,
University of Adelaide
School of Paediatrics and Reproductive Health,
King William Road,
North Adelaide,
South Australia,
Australia 5006.
Email: [email protected]
Tel: 61 8417818562
RE: Research Priorities in Sudden Unexpected Infant Death: An International Concensus
Hauck et al., prepared an interesting report on Sudden Unexpected Infant Death (SUID) and priorities for research to explain it. They state that 25 years ago, research into SIDS led to a ‘breakthrough’ which identified that “infants who slept on their stomachs were significantly more likely to die of SIDS than infants who slept on their backs [1].” Breakthrough? Almost 75 years ago, Harald Abramson [2] published in J. Pediatrics a proscription against the daytime practice of placing the infant in the prone position for sleep – unless constantly guarded. “The practice should, furthermore, be entirely done away with at night.” Fortunately, my thesis professor taught me the importance of reading the references of my references to prevent such oversights when a blind eye is turned to the past literature. For example, neither the subject article nor its references cite any article from the JSIDS & Infant Mortality. In fact, Research Priority 5 was already addressed in JSID&IM 1996; 1 (1):45-50 by Byard, Stewart and Beal, who found no premortem pathological difference between prone and supine SIDS – “and thus [non-lividity pathology] could not be used to differentiate between these two groups.”
The authors also accept the illogical redefinition of SIDS to only include infants under 1 year of age.[3] This is NOT a redefinition as 1 year is not a defined interval of time: One second, 1 minute, 1 hour, 1 day, 1 week and 1 fortnight are all fixed and relatable to each other. But 1 month and 1 year are floaters, as unfixed as February in a Leap Year.[4] This can be resolved by defining four consecutive years as equal to 3 x 365 + 366 = 1461 days or 365.25 days/year. Therefore 1 year = 365.25 x 24 x 60 x 60 = 31,557,600 seconds/year. If so, 31,557,599 seconds are less than 1 year and how could an infant die of SIDS then but not 1 second later? The very thought is ludicrous, and reflects on any ‘triple-risk’ model that also imagines an unstable development period and physiological susceptibility and exogenous stressor that simultaneously turn off in 1 second at the 1-year point.
In engineering school, we had a maxim that “If your solution to a differential equation does not meet the boundary conditions, it is not the correct solution to the problem.” If the reader makes a plot of the logarithms of the SUID rates in Table 2 of Parks et al.[5] vs the infant age at death, in months (sic), it will show the SUID rate going exponentially to zero well beyond 1-year, without an unrealistic truncation at 1-year.
References
1. Horne RSC, Hauck FR, Moon RY. Sudden infant death syndrome and advice for safe sleeping. BMJ 2015;350:h1989 doi: 10.1136/bmj.h1989
2. Abramson H. Accidental mechanical suffocation in infants. J Pediatr 1944;25:404-413
3. Willinger M, James S, Catz C. Defining the SIDS: Deliberations of an Expert Panel convened by the National Institute of Child Health and Human Development. Pediatr Pathol 1991;11:677-684.
4. Rogers v. Tennessee, 532 U.S. 451 (2001). Year and a day rule.
5. Parks SE, Erck Lambert AE, Shapiro-Mendoza CK. Racial and ethnic trends in Sudden Unexpected Infant Deaths: United States, 1995-2013. Pediatrics 139 (6), June 2017:e20163844.