Passive Surveillance of Shaken Baby Syndrome Using Hospital Inpatient Data

doi:10.1016/j.amepre.2007.11.004

American Journal of Preventive Medicine

Volume 34, Issue 4, Supplement, April 2008, Pages S134-S139

https://doi.org/10.1016/j.amepre.2007.11.004 Get rights and content

Background

The conference from which these articles came addressed the question of public health surveillance for shaken baby syndrome (SBS) and explores one component of a comprehensive SBS surveillance system that would be relatively easy to implement and maintain: passive surveillance based on hospital inpatient data. Provisional exclusion and inclusion criteria are proposed for a two-level case definition of diagnosed SBS (strict definition) and cases presumed to be SBS (broad definition). The strict SBS definition is based on the single SBS code in the ICD-9-CM (995.55). The broader presumptive SBS definition is based on research studies that have identified a pattern of diagnostic codes often considered part of the clinical diagnosis of SBS.

Results

Based on 2006 analyses, California inpatient data are presented for 1998–2004. The strict SBS definition identified 366 cases over the 7 years, whereas the broader definition captured nearly 1000 cases. Annual rates show little fluctuation from the overall rate of 5.1 for strict SBS and 14.0 for broad SBS (per 100,000 children aged <2 years). Selected demographic and outcome characteristics are presented for each definition. The broad definition produces rates that are roughly comparable to those produced in careful clinical and population-based studies that also included children who died without being hospitalized.

Conclusions

Despite the limitations of inpatient data, a passive surveillance system like the one proposed here can provide a critical component for a comprehensive SBS surveillance system and may be adequate for some purposes, including identifying high-risk areas or groups for intervention and monitoring trends over time.

Introduction

In the last 30 or so years, researchers have published many papers on shaken baby syndrome (SBS), also known as inflicted traumatic brain injury (inflicted TBI). This literature describes the nature of SBS and its risk factors, giving a reasonably clear picture of this phenomenon, how it occurs, and its effects. For example, SBS, or also referred to as abusive head trauma, is an extremely serious form of physical abuse occurring primarily in infants and young children aged <2 years and accounts for the vast majority of fatal and life-threatening injuries caused by child abuse. The outcomes of SBS are often devastating, with high case-fatality rates (15% to 38%) and incidence of neurologic consequences.1, 2, 3 Recent estimates suggest incidence rates for infants of 24.6 to 29.7 per 100,000 infants, and 17.0 per 100,000 for children aged <2 years.4, 5

As this body of knowledge continues to develop, the question is raised of how to conduct surveillance for SBS. Public health surveillance is the continuing and routine gathering of information useful for understanding and monitoring the health of the public.⁶ Unlike research, surveillance answers questions about changing incidence and characteristics of disease. Research is beginning to suggest that prevention of SBS may be possible.7, 8 Thus, SBS is joining the list of public health problems (e.g., HIV/AIDS, diabetes, traumatic spinal cord injury, asthma, and occupational silicosis) that may be controlled if surveillance data are available to help monitor and evaluate population-based prevention policies and programs.⁹ This article proposes that hospital inpatient discharge data can provide a critical component for SBS surveillance.

Section snippets

Methods

Disease and health surveillance systems differ greatly according to whether they capture fatal, severe, or less-severe cases; use passive or active data-collection methods; collect limited or detailed information; are slow or timely; and other dimensions. Unlike medicine, which seeks case-specific information for clinical decisions, the purpose of public health surveillance is to capture population-based information accurately enough to base policy decisions and program planning. For

Results

Figure 1 displays the SBS surveillance data from California based on inpatient data analyzed in 2006. Annual rates for 1998–2004 show little fluctuation, with a modest downward trend in SBS, defined by either strict or broad criteria. Over the 7 data years, there is little departure from the overall rate of 5.1 for strict SBS and 14.0 for broad SBS (per 100,000 children <2 years). The meaning of the slight decline is unclear, but is consistent with another recent study.²²

Table 1 compares

Discussion

This article is meant to stimulate dialogue on how best to develop feasible, sustainable surveillance of SBS using hospital inpatient data. Based on previous studies,3, 4, 23, 24 provisional exclusion and inclusion criteria were developed for cases of diagnosed SBS (strict definition) as well as for cases presumed to be SBS (broad definition). Table 2 shows that the broad definition produces rates per 100,000 children aged <1 and 2 years, respectively, that are roughly comparable to those

Conclusion

Despite the limitations of inpatient data, a passive surveillance system like the one proposed here can provide a critical component to a comprehensive SBS surveillance system, and may even be adequate for some purposes, including identifying high-risk areas or groups for intervention and monitoring trends over time. However, given the rare incidence of SBS, there will need to be a complete set of convergent surveillance measures that cover the full injury pyramid, including deaths,

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Cited by (21)

Epidemiology of abusive head trauma in West Virginia children <24 months: 2000–2010
2019, Child Abuse and Neglect
Citation Excerpt :
Consistent with the narrow definition of AHT of the CDC and with the criteria used in the NC study, intracranial injury had to be documented for inclusion as a case. ( Keenan, 2008; Parks et al., 2012; Shanahan et al., 2013) The minimum criteria for inclusion as a case was the presence of intracranial injury in addition to a history incompatible to explain the injury (Reece, 2008). An additional board-certified Child Abuse Pediatrician performed a second review of potential cases to ensure interrater reliability.
Few states have published statewide epidemiology of abusive head trauma (AHT).
To examine the statewide epidemiology of AHT in West Virginia (WV), with the primary objective of establishing AHT incidence for comparison to national data, and to use as a baseline for comparison to incidence post-implementation of a statewide AHT prevention program.
AHT cases in children less than 2 years old were identified from the 3 tertiary pediatric centers in WV.
Cases were identified by using ICD-9 codes for initially identifying those with injuries which might be consistent with AHT, followed by medical record review to determine which of these met the criteria for inclusion as a case. Medical examiner data was used to find additional cases of AHT. Using the number of cases identified along with relevant census data, incidence of AHT was calculated.
There were 120 cases of AHT treated in WV hospitals from 2000 to 2010, 100 of which were WV residents. The incidence was 36.1/100,000 children <1 year of age and was 21.9 cases per 100,000 children <2 years of age. Incidence in infants increased during the latter years (2006–2010) of the study to 51.8/100,000 compared to the incidence during 2000–2005, which was 24.0/100,000 (p < .01).
Compared to US national, state and regional figures, the WV incidence of AHT was among the highest. In addition, the incidence of AHT increased significantly over the study period. Possible factors contributing to the rise in incidence are discussed.
Identification of physical abuse cases in hospitalized children: Accuracy of international classification of diseases codes
2013, Journal of Pediatrics
Hospital discharge databases are being increasingly used to track the incidence of child physical abuse in the United States. These databases use International Classification of Diseases, 9th Revision, Clinical Modification (ICD-9-CM) codes to categorize illnesses and injuries in hospitalized patients. We assessed the accuracy of the assignment of these codes for cases of child physical abuse.
Participants were all children (N = 133) evaluated by a child abuse pediatrician (CAP) for suspicion of abuse at Yale-New Haven Children's Hospital from January 1, 2007-December 31, 2010. These children included both those judged to have injuries from abuse and those judged to have injuries accidental/medical in nature. We compared the ICD-9-CM codes entered in the hospital discharge database for each child with the decisions made by the CAPs, as documented in their child abuse registry. The CAPs' decisions were considered to be the gold standard. Sensitivity and specificity were calculated. Medical records were reviewed for cases in which the ICD-9-CM codes disagreed with the CAP's decision.
In 133 cases of suspected child physical abuse, the sensitivity and specificity of ICD-9-CM codes for abuse were 76.7 % (CI 61.4%, 88.2%) and 100% (CI 96.0%, 100%), respectively. Analysis of the 10 cases of abuse not receiving ICD-9-CM codes for abuse revealed that errors in physician documentation (n = 5) and in coding (n = 5) contributed to the reduction in sensitivity.
Despite high specificity in identifying child physical abuse, the sensitivity of ICD-9-CM codes is 77%, indicating that these codes underestimate the occurrence of abuse.
Using international classification of diseases, 10th edition, codes to estimate abusive head trauma in children
2012, American Journal of Preventive Medicine
Citation Excerpt :
If the cases included codes for coagulation defects or birth trauma, they were excluded from the Narrow cases (n=4); cases with codes for coagulation defects, birth trauma, or osteochondrodysplasia were excluded from the Broad cases (n=5). Consequently, cases were defined by using combinations of ICD-10 codes that reflected varying degrees of specificity (designated “Narrow” and “Broad,” following Wirtz and Trent9) and of certainty (designated “Presumptive” and “Probable,” as in Parks et al.10). Cases classified as “narrow, presumptive” would represent the most-specific and conservative estimates of AHT; cases classified as “broad, probable” would represent more-sensitive but less-specific estimates of AHT that would be more encompassing and include additional cases of abusive head trauma.
Passive surveillance using ICD codes for hospital discharges has been used to estimate the incidence of abusive head trauma (AHT) utilizing ICD-9-CM, but not ICD-10, codes. There have been no incidence estimates of AHT in Canada where ICD-10 codes have been used since 2002. The Discharge Abstract Database from the Canadian Institute of Health Information (CIHI) for 2002–2007 was used for analyses conducted in 2011. A case was defined by code combinations that indexed injury specificity (narrow or broad) and degree of certainty (presumptive or probable) that the injury was inflicted. Estimated incidences for the populations at risk in those aged <12 months and 12–23 months from 2002–2007 were determined.
For those aged <12 months, the mean incidence for “narrow, presumptive” AHT was 13.0 (95% CIs=11.3, 14.9) per 100,000 person-years; for “broad, probable” it was 15.5 (13.6, 17.6) per 100,000 person-years. For those aged 12–23 months, the “narrow, presumptive” incidence was 2.4 (1.7, 3.3) and the “broad, probable” incidence was 2.8 (2.0, 3.8) per 100,000 person-years, respectively. Month and year of age patterns were similar to previous reports. ICD-10 codes can be used to estimate incidence of AHT. Narrower classifications provide estimates consistent with those from other surveillance programs in Canada and internationally.
Management of atypical infant colic - a pain syndrome of infancy - and the emotional stress associated with it: Why treat a benign disorder?
2011, Clinical Chiropractic
To present one case study in which the complete resolution of atypical infantile colic – a pain syndrome of infancy – and associated symptoms and emotional stress was achieved when the patient underwent chiropractic treatment.
A case report.
Private chiropractic practice.
This case involved a 4-month-old male infant presenting with excessive crying and associated head malposition, disturbed feeding and sleeping patterns, all of which started one-and-a-half months previously. Upper cervical, mid thoracic and cranial dysfunction as well as suboccipital musculature hypertonicity was recorded in this case.
The infant received diversified low-force chiropractic manipulation to the upper cervical spine and low-pulsed impulses to the thoracic spine. Additionally, soft tissue stretching to the restricted cervical and trunk musculature and light touch cranial manipulative therapy was given to the infant. Treatment was provided over a 4-week period, twice weekly and included supportive care (advice about emotional disturbances and coping mechanisms in times of overwhelming feelings were given to the parents).
Complete resolution of all presenting symptoms was achieved in this instance.
This case suggests a possible association between the development of cranial and spinal segmental dysfunction, muscular imbalance and consequential manifestation of symptoms of a pain syndrome of infancy. It also illustrates chiropractic treatment restoring correct spinal and cranial motion, with an associated resolution of symptoms. Finally, it emphasizes the importance of offering help for distressed caregivers.
Identification of ICD codes suggestive of child maltreatment
2011, Child Abuse and Neglect
Citation Excerpt :
In spite of these complex issues, ICD-coded data have been used for public health surveillance of a variety of causes of morbidity and mortality. Recently, several studies have investigated the use of hospital discharge data for surveillance of a specific type of child abuse, inflicted traumatic brain injury in infants (Ellingson, Leventhal, & Weiss, 2008; Wirtz & Trent, 2008). Moreover, hospital discharge data are one of the data sources proposed for use in developing a system to measure and monitor the incidence of inflicted traumatic brain injury (Runyan, Berger, & Barr, 2008).
In order to be reimbursed for the care they provide, hospitals in the United States are required to use a standard system to code all discharge diagnoses: the International Classification of Disease, 9th Revision, Clinical Modification (ICD-9). Although ICD-9 codes specific for child maltreatment exist, they do not identify all maltreatment-related hospital and emergency department discharges. To increase the usefulness of medical data for public health surveillance of child maltreatment, this project sought to identify ICD-9 codes that are suggestive of child maltreatment.
After review of the literature and discussions with experts, injuries and conditions that should raise suspicion of child maltreatment (physical or sexual abuse or neglect) were identified and a list of corresponding ICD codes was compiled. Using a statewide electronic database of hospital discharges and emergency department (ED) visits for the year 2000, visits by children assigned these ICD codes were identified, a sample of visits was selected, and medical records were reviewed to assess the circumstances of the injury or illness that led to the visit. Based on information in the medical record, the injury or illness was classified as maltreatment-related, or not.
There were 3,684 visits selected for review. Of these, 2,826 records were reviewed and classified; 1,200 (43%) records met the criteria for being maltreatment-related, 1,419 (50%) contained adequate information indicating the injury/condition was not likely maltreatment-related, and 207 (7%) records did not contain enough information to classify. Sixty-eight ICD codes had >66% of visits classified as maltreatment-related, the a priori criteria for a code to be considered suggestive of maltreatment. Codes suggestive of maltreatment include specific fractures, burns, and injuries of undetermined intent, among others.
Several ICD codes were found that, when used with age restrictions and other specific exclusion criteria, are suggestive of maltreatment. This information may increase the usefulness of hospital discharge data for public health surveillance of child maltreatment.
Use of these suggestive codes facilitates identifying conditions and injuries that are likely maltreatment-related in hospital discharge and ED visit data. When used in conjunction with ICD maltreatment-specific codes, these suggestive codes may enhance the use of medical data for monitoring child maltreatment trends.
Non-accidental head injury in New Zealand: The outcome of referral to statutory authorities
2009, Child Abuse and Neglect
Citation Excerpt :
NAHI, often described as “shaken baby syndrome,” is a significant issue in child health. The incidence is remarkably consistent across the world in epidemiologic studies published to date, with rates of 20–30 per 100,000 infants under the age of 1 year (Barlow & Minns, 2000; Ellingson, Leventhal, & Weiss, 2008; Hobbs, Childs, Wynne, Livingston, & Seal, 2005; Jayawant et al., 1998; Keenan et al., 2003; Kelly & Farrant, 2008; Minns, Jones, & Mok, 2008; Wirtz & Trent, 2008), and a high morbidity and mortality (Barlow, Thomson, Johnson, & Minns, 2005). Many more cases may go unrecognised (Jenny, Hymel, Ritzen, Reinert, & Hay, 1999; Reijneveld, van der Wal, Brugman, Sing, & Verloove-Vanhorick, 2004; Runyan, 2008; Theodore et al., 2005).
To describe the outcome of referral to the statutory authorities for infants under 2 years with non-accidental head injury (NAHI), and to establish whether the authorities held sufficient information to develop a risk profile for these cases.
Retrospective review of cases admitted to hospital in Auckland, New Zealand from 1988 to 1998. Records from the hospital admission, child protective services and Police were reviewed, up to 19 years from diagnosis.
Of 39 infants, 33 survived to leave hospital. Documentation of risk factors was erratic, and sometimes incongruent between agencies. Inter-agency case conferences took place in 17/39 (44%). The Department of Child, Youth and Family Services (CYF) used an informal family agreement to secure safety in 15/33 survivors (45%). Family Group Conferences occurred in 17/33 (52%). Nine of 33 were placed permanently outside the home (27%), two (6%) with unrelated caregivers. Charges were laid in 18/39 cases (46%). Fifteen cases came to trial, with 14 convictions (36%). Of the survivors, 44% were later renotified to CYF. There was no obvious relationship between type of intervention and re-notification.
Ensuring the safety of an infant with NAHI, and identifying and taking appropriate action with regard to the offender, are complex tasks. In New Zealand, data collection is often incomplete and inter-agency practice and collaboration is variable. Although the rate of prosecution was relatively high by international standards, many children were later notified again for further concerns of abuse or neglect, suggesting that our interventions have been only partially successful.
This paper suggests that all infants admitted to hospital with non-accidental head injury should become part of a prospective inter-agency research study, using a standardised data collection instrument. This should include the systematic collection of all data known or suspected to be associated with risk of child abuse, and incorporate long-term prospective follow-up, regardless of child protective or legal outcomes. Without large numbers followed prospectively and according to sound methodology, it is difficult to prove which forms of intervention are better than others at reducing the risk of further abuse.

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Findings from current measuring systemPassive Surveillance of Shaken Baby Syndrome Using Hospital Inpatient Data

Background

Results

Conclusions

Introduction

Section snippets

Methods

Results

Discussion

Conclusion

Child Abuse Negl

Lancet

Am J Prev Med

Shaken baby syndrome: rotational cranial injuries—technical report

Pediatrics

Joint statement on shaken baby syndrome

A population-based study of inflicted traumatic brain injury in young children

JAMA

Shaken baby syndrome in Canada: clinical characteristics and outcomes of hospital cases

Can Med Assoc J

Updated guidelines for evaluating public health surveillance systems: recommendations from the Guidelines Working Group

MMWR Recomm Rep

Preventing abusive head trauma among infants and young children: a hospital-based, parent education program

Pediatrics

Preventing Shaken Baby Syndrome and Infant Abuse, 2006Important Update about the Period of PURPLE Crying Program

Building an effective child maltreatment surveillance system in North Carolina

N C Med J

Epidemiologic features of the physical and sexual maltreatment of children in the Carolinas

Pediatrics

Child abuse and neglect by parents and other caregivers

How states are collecting and using cause of injury data: 2004 update to the 1997 report

Hospitalized fall injuries and race in California

Inj Prev

Findings from current measuring system
Passive Surveillance of Shaken Baby Syndrome Using Hospital Inpatient Data