National Performance Measure #5

 

1. Percent of infants placed to sleep on their back
2. Percent of infants placed to sleep on a separate approved sleep surface
3. Percent of infants placed to sleep without soft objects or loose bedding

 

Evidence Based or Informed Strategy Measure: Percent of infants enrolled in Healthy Families America (HFA) home visiting who are always placed to sleep on their back, without bed-sharing or soft bedding.

 

Objective: By January 2022, 50% of infants enrolled in home visiting will be placed to sleep on their back, without bed-sharing or soft bedding.

 

Strategies:

 

1. Collaborate with the HFA home visiting program on their materials and education for families on placing their infant to sleep on their back in a separate approved sleep surface without soft objects or loose bedding.
2. Train home visitors, DCYF personnel, law enforcement, service providers (anyone who goes into the family’s home) on safe sleep practices.
3. Promote public education on safe sleep.
4. Utilize home visiting and PRAMS data to inform key stakeholders about safe sleep and education needed.
5. Utilize the SUID committee recommendations for risk factors and identify possible points of intervention. 
6. Utilize the Safe Sleep Workgroup to identify possible avenues to gain insight into why infants are not being placed to sleep on their backs, without bed-sharing or soft bedding.
7. Collaborate with NH American Academy for Pediatrics Champion on messaging for providers.

 

Reporting on National Performance Measure #5:

 

National Outcome Measure 9.1 – Infant mortality rate per 1,000 live births

 

National Outcome Measure 9.3 – Post-neonatal mortality rate per 1,000 live births

 

National Outcome Measure 9.5 – Sleep-related Sudden Unexpected Infant Death (SUID) rate per 100,000 live births

 

NOM data for NH from the National Vital Statistics System (NVSS) indicate that the State is seeing small changes (not attaining statistically significant difference) in infant mortality. Infant mortality went from 4.2 per 1,000 live births in 2017 to 3.5 in 2018 (the lowest in the U.S.) and post-neonatal mortality went from 1.4 per 1,000 live births in 2017 to 1.1 per 1,000 live births in 2018. Data from NVSS for NH show that the rate for SUID deaths for 2018 is not reportable due to small number of cases (5).

 

        Infant mortality: infant deaths under one year of age per 1,000 live births.

        Maternal and Child Health Bureau. Federally Available Data (FAD) Resource Document. April 13, 2021; Rockville, MD: Health Resources and Services Administration. Available at: https://mchb.tvisdata.hrsa.gov/PrioritiesAndMeasures/NationalPerformanceMeasures

 

       * Interpret With Caution

       Post neonatal mortality: deaths of infants aged 28 days through 11 months per 1,000 live births

       Maternal and Child Health Bureau. Federally Available Data (FAD) Resource Document. April 13, 2021; Rockville, MD: Health Resources and Services Administration. Available at: https://mchb.tvisdata.hrsa.gov/PrioritiesAndMeasures/NationalPerformanceMeasures

 

 

According to the CDC, in 2019 there were about 3,390 SUID deaths in the US.[1] Data from NVSS for NH show that the rate of SUID deaths from 2018 is not reportable due to small number of cases (5). 

 

SUID deaths are defined as the sudden unexpected death of an infant less than one year (1) old which has no immediately obvious cause of death. These deaths are categorized as Sudden Infant Death Syndrome (SIDS), unknown cause, and accidental suffocation and strangulation in a sleep setting. NH’s SUID rate has varied over the past few years (see below). NH’s SUID rate per 1,000 live births was 0.5 in 2019 and increased to 0.8 in 2020 as compared to the national rate 0.90 deaths per 1,000 live births in 2019.

 

 

 

Nationally, in 2019 there were approximately 1,250 (28.3%) deaths due to SIDS, 1,180 (37%) deaths due to unknown cause and 960 (34.7%) deaths due to accidental suffocation and strangulation in a sleep setting.[2]  NH remains consistent with the national data in that SIDS is one of the leading cause of infant deaths.

 

SIDS is one (1) of three (3) categories of SUID. SIDS is the sudden death of an infant under one (1) year of age that cannot be explained, even after a thorough investigation that includes a complete autopsy, death scene investigation, and review of the infants’ clinical history. With the success of national campaigns that educate parents, childcare providers, caregivers, and families to place the infant to sleep on their back on a firm flat mattress is paying off. SIDS cases nationally have continued to drop since the early 1990’s and overall SUID rate appears to be leveling off.

 

 

 

NH 2019 data showed, 3 (50%) of SUID deaths occurred within the first four (4) months of age. In 2020, 5 (56%) occurred within the first four (4) months of age. Among all causes of infant deaths in NH, deaths due to complications of pregnancy and delivery continue to be the leading cause of death with SUID being the second leading cause of death. 
 

 

New Hampshire Residents, Cause of Death Counts, Infants (under 1 year), 2015-2020

 

Cause of Death	Manner/Intent	2015	2016	2017	2018	2019	2020	Total
Certain conditions originating in the perinatal period	Natural	18	14	19	17	11	17	96
Diseases of the respiratory system	Natural	5	11	10	7	9	11	53
SUID- Sudden Unexpected Infant Death Syndrome (ICD10 Code: R99)	Undetermined	9	5	3	2	2	1	22
SUID- Sudden Unexpected Infant Death Syndrome (ICD10 Code: R95)	Undetermined		1		1		6	8
SUID- Sudden Unexpected Infant Death Syndrome (ICD10 Code: Other)	Natural			2	2		1	5
SUID- Sudden Unexpected Infant Death Syndrome (ICD10 Code: R95)	Natural			1	2		1	4
SUID- Sudden Unexpected Infant Death Syndrome (ICD10 Code: R99)	Natural		1	1				2
SUID- Sudden Unexpected Infant Death Syndrome (ICD10 Code: W75)	Accidental	1	1		1	3		6
Congenital malformations, deformations and chromosomal abnormalities	Natural	6	2	6	5	4	9	32
Diseases of the circulatory system	Natural	2	6	3	3	6	2	22
Other disorders originating in the perinatal period	Accidental	1						1
Other disorders originating in the perinatal period	Natural	3	1	4	1		1	10
Diseases of the digestive system	Natural		1			2	2	5
Homicide	Homicide	2	1	1			1	5
Diseases of the nervous system	Natural	2	1					3
Endocrine, nutritional and metabolic diseases	Natural	2						2
Neoplasms	Natural	1				1		2
Certain infectious and parasitic diseases	Natural				1			1
Diseases of the genitourinary system	Natural				1			1
Pending	Pending			1				1
Grand Total		52	45	51	43	38	52	281

Source: NH Division of Public Health Services/Maternal and Child Health Section and NH Office of the Chief Medical Examiner, as of August, 2021
 

Deaths from ICD10 codes (R95, R99, W75 and other) include SIDS, accidental suffocation and strangulation in a bed setting, and undetermined. However, not all undetermined deaths have unsafe sleep factors associated with it.

 

Broken down in the graphic below, over the past five years (2015-2020), there have been a total of 47 SUID deaths, six (13%) due to accidental suffocation and strangulation in a sleep setting; 12 (26%) due to SIDS, and 12 (51%)were undetermined; five (11%) were due to SUID other. ‘Other’ is classified as undetermined cause of death that does not have unsafe sleep factors. In NH, the SIDS rate has decreased, but due to the small number of cases, there is no statistically significant difference between year groups.

 

 

Systems Building

 

The multidisciplinary SUID Review Committee meets three (3) times a year. The Safe Sleep Workgroup, a subcommittee of the SUID Review Committee, meets every other month to work on recommendations identified during the case reviews. Data from cases of SUID deaths reviewed by the SUID Review Group helped the State focus its strategies for targeted groups

 

At the end of 2019, MCH participated in a yearlong lean project with the DCYF’s Bureau of Program Quality (BPQ) and the Division of Quality Assurance and Improvement (DQAI). The primary approach of the lean project was to evaluate and review the workflow deployed by the three (3) divisions as it relates to child fatality reviews and recommendations. Process mapping, fishbone (cause and effect diagram) and PICK charts were utilized to determine areas for collaboration (see below).

 

From this work the program identified areas for collaboration for streamlining internal processes. Areas for collaboration included joint understanding of common recommendations between fatality/critical reviews, interdepartmental policy for data sharing, hiring of staff for fatality teams, streamlining processes for interdependencies, and public messaging for safe sleep. From this work, MCH has gained knowledge and insight on the cross-cutting nature of the work to promote safe sleep.

 

Reporting on MCH Specific Strategies

 

1. Collaborate with the HFA home visiting program on their materials and education for families on placing their infant to sleep on their backs in a separate approved sleep surface without soft objects or loose bedding.

In October 2019, the home visiting program partnered with The Government Performance Lab to pilot a project to support connecting families who had or were expecting to have a substance-exposed infant, with evidence-based home visiting services. The pilot project was developed, which included partnerships with the home visiting and child protective services serving the majority of families who gave birth at Concord Hospital. These providers included Community Action Program Belknap-Merrimack Counties, Inc. and Waypoint (specifically Merrimack County), as well as the Concord and Laconia DCYF district offices, and the Concord Hospital Nurse Administrator and social worker. Additionally, through the project, the associated prenatal practices in Concord and Laconia also became involved in the project.

 

The goal of this pilot project was to develop and implement a referral system to connect and successfully enroll new and expecting families with substance exposed infants into home visiting. The partnership facilitated more seamless, “warm” referrals for infants with known or anticipated substance exposure to home visiting programs through their various professional contacts, including prenatal care providers, delivery hospital staff, and child protective services. Home visiting also partnered with DCYF’s central intake to refer expectant parents with substance use disorder prenatally to home visiting, rather than simply screening out the referral until the child is born, as was the previous practice. As part of the pilot project, families were provided materials and education on safe sleep. Information included placing their infant to sleep on their back in a separate approved sleep surface without soft objects or loose bedding during all sleep times (naps, night time).

 

Through the work of this pilot project, home visiting referrals increased from a statewide baseline of approximately 5% of eligible families being enrolled in home visiting services. At Concord Hospital, the percentage of families enrolling in home visiting increased to 11%, despite the enumerable challenges faced by the medical community due to COVID‑19; families enrolling in home visiting services who were referred by DCYF increased to 28% between July 2020-January 2021.

 

2. Train home visitors, DCYF personnel, law enforcement, service providers (anyone who goes into the family’s home) on safe sleep practices

MCH staff continues to be involved in the efforts by DCYF to comply with the requirements of the federal Comprehensive Addiction and Recovery Act (CARA) signed in July 2016. The plan of safe care (POSC) includes education for safe sleep. Hospitals who complete a POSC, if one was not done prenatally, provide this information to DHHS through the birth certificate, regarding infants born with substance abuse or withdrawal symptoms resulting from prenatal drug exposure or fetal alcohol spectrum disorder. MCH is a partner in the process of ensuring that all birth facilities are compliant with federal and state requirements. Birth certificate questions (along with any updates) will contribute to informing the activities of the Task Force.

 

The Perinatal Substance Exposure Task Force continues to provide technical assistance on the POSC, with outreach efforts, and state monitoring and data collection. Participation in the Perinatal Substance Exposure Task Force will continue as the Task Force responds to current and emerging substance exposure threats to maternal and infant health. For more information on the New Hampshire POSC template please visit, https://nhcenterforexcellence.org/governors-commission/perinatal-substance-exposure-task-force/plans-of-safe-care-posc/

 

3. Promote public education on safe sleep

Ongoing efforts continue for public education on safe sleep. Due to staffing capacity and COVID‑19, the program has not created any new public health education on safe sleep. However, since the hiring of a program coordinator in early 2021 it is expected that public education on safe sleep will increase.

4. Utilize home visiting and PRAMS data to inform key stakeholders about safe sleep and education needed

 

The SUID/SDY Program issued a Public Health data brief in 2019 on sleep related infant deaths, which included data from PRAMS. Due to staff capacity and ongoing pandemic efforts the program was unable to issue and update the data brief in  2020. However, it is anticipated the SUID/SDY Program will issue data brief in 2021 to include both 2019 and 2020 data. This data brief is expected to be released late 2021. The SUID program will continue to provide technical assistance to hospitals and stakeholders and disseminate the latest PRAMS data on safe sleep behaviors and safe sleep environments annually.

 

5. Utilize the SUID committee recommendations for risk factors and identify possible points of intervention. 

During the case reviews the SUID program collected data on risk factors, protective factors and insurance coverage to determine possible points of intervention. From the data collected the program identified missing data points. During each case review additional information will be collected (Plan of Safe Care, the birth hospital). By collecting this data the program will be able to identify if there are any gaps around safe sleep education. 

 

Although safe sleep education is being carried out in the prenatal and postpartum health care settings, data on the State’s SUID cases indicate that some parents and caregivers are not necessarily following the safe sleep instructions.

 

 

 

6. Utilize the Safe Sleep Workgroup to identify possible avenues to gain insight into why infants are not being placed to sleep on their backs, without bed-sharing or soft bedding.

The Safe Sleep workgroup has met every other month to determine the target audience for education, trainings, and policies and practices around safe sleep. The workgroup has identified that providers (all types), general public, and high risk populations would benefit from safe sleep education, training and development of polices. The materials for safe sleep promotion have been developed; however, the workgroup is in the process of determining the best way to provide the information to the targeted audiences. The workgroup is developing virtual “town hall” meetings. The SUID Program plans to partner with other state agencies to promote attendance. Logistics and partners have been identified and the program is in process of developing materials/content for the first meeting in early 2022. 

 

During one of the workgroups it was shared that hospitals throughout NH are conducting crib audits as part of the national organization, Cribs for Kids National Safe Sleep Hospital Certification program, which recognizes individual hospitals and hospital systems for their commitment to infant safe sleep. As a national authority on infant safe sleep, Cribs for Kids hospital certification program offers bronze, silver, or gold designations to hospitals that model and teach infant safe sleep best practices. In NH there are five (5) hospitals that are certified (two gold, one silver, and two bronze). Part of the program is to conduct crib audits, which consist of spot checking inpatient cribs to see what is in the crib and how the infant is positioned. However, there are two (2) additional hospitals that conduct crib audits who are not certified, it is a standard of care for the mother and infant.

 

7. Collaborate with NH American Academy for Pediatrics (AAP) Champion on messaging for providers.

Due to staffing capacity the program has not connected with the NH AAP. Since the hiring of the SUID Program Coordinator in January 2021 it is expected that the SUID Program will collaborate NH AAP for safe sleep messaging for providers for the virtual “town hall” meetings in 2022. 

 

 

*  *  *  *  *  *  *

 

 

 

Birth Conditions Program 2020-2021

 

About Birth Conditions and the New Hampshire Birth Conditions Program (NH BCP)

 

Each year, approximately 7.9 million children are born with a serious birth defect of genetic or partially genetic origin. That equates to about 6% of total births worldwide. At least 3.3 million children under five years if age die from birth defects each year and an estimated 3.2 million of those children who survive may be disabled for life.[3]

 

In the United States, birth defects affect one in 33 infants born.[4] A leading cause of death, birth defects account for 20% of all infant deaths nationwide.[5] Birth defects lead to $2.6 billion per year in hospital costs alone in the U.S.[6]

 

The NH Birth Conditions Program (BCP) is a public health surveillance program that has been collecting statewide data since 2003, monitoring 45 birth conditions (defects). 

 

The mission of the BCP is to help develop birth conditions prevention strategies, support epidemiological research into the causes and public health impact of birth conditions, improve the ability of families to access intervention programs and services for infants and children with birth conditions, and to educate the community, health care providers, and service agencies regarding birth conditions.

 

Surveillance

 

The BCP utilizes an active case ascertainment model, wherein cases are identified using various data sets. Data is compared using vital records and open discharge records at the hospital level. Once potential cases are identified, the record abstracter reviews all records to confirm that cases meet the criteria for inclusion in the surveillance system. The NH BCP utilizes case inclusion guidelines from the National Birth Defects Prevention Network (NBDPN).

 

During 2020, NH BCO continued to work on abstraction and data analysis for the period January 2018 to June 2019. With 2020 being a challenging year for all due to the COVID-19 pandemic, hospitals experienced the brunt of these challenges. The BCP is dependent on the hospital Health Information Management (HIM) and Information Technology (IT) departments to fulfill requests for record review. These departments at NH’s birth hospitals were running with skeleton crews, as much of the staff in these departments were furloughed. Consequently, many were not able to fulfill requests until late summer/early fall and some have not fulfilled the requests as of this writing.

 

For the review period January 2018 to June 2019, 19 birth hospitals had active birthing units. All birth hospitals were solicited for record review and abstraction. Two of NH’s larger birth hospitals and one small birth hospital were unable to respond to this request during 2020. Of the remaining 16 birth hospitals, the BCP has completed record review and abstraction of records at the hospital level for eight (8) hospitals, four (4) are in process, and four (4) remain to be reviewed. Of the eight (8) completed at the hospital level, preliminary data analysis is finished for four (4). Preliminary data is defined as case counts that have not been de-duplicated or nor completed the confirmation process. A confirmed birth defect is verified by review of specialist consult for verification of the birth defect after the infant is born, up to age two (2) years. Confirmation consists of contacting primary care offices and specialist offices for information and confirmation of the birth defect identified via record abstraction.

 

De-duplication is an essential function to prevent birth defects from being counted more than once. De-duplication occurs after all records have been reviewed abstracted and entered into the database system for all hospitals. Once the birth defect is confirmed, legislation requires the BCP to contact the parent(s) of the infant identified to offer information about the BCP Registry, including services that the family and infant might be eligible for, and to offer the parents the option of declining participation in the registry. There were 17,705 births to NH residents for the associated birth years. For the eight (8) hospitals for which record review has occurred, approximately 1500 records have been reviewed by the abstractor with approximately 143 unconfirmed birth defects identified, though these have not been de-duplicated.

 

During the COVID-19 pandemic, the BCP worked collaboratively with the Bureau of Infectious Disease Control (BIDC) and the MCH Epidemiologist to identify COVID-19 outcomes in mothers and infants for the Center for Disease Control and Prevention Surveillance for Emerging Threats to Mothers and Babies (SET-NET) project. In this collaborative effort, BIDC supplies the confirmed lab data, the MCH Epidemiologist provides the link and data from Vital Records, and the NH  BCP requests and compiles mother and infant data. An existing MOA between MCH and Vital Records allows Vital Records to support a situational enhancement to data collection using the birth record. This enhancement allows for monitoring events that effect birth outcomes and is being used in this instance for the SET-NET project. This rapid surveillance capability allows for near real-time data collection surrounding these events.

 

The BCP and Early Hearing, Detection and Intervention (EHDI) programs share the current surveillance database system. While the EHDI system has hearing information input into the surveillance system at the hospital level, the BCP currently does not. Once hearing information is input, the EHDI staff must match this hospital-entered information to the vital record for the patient demographic information to be verified as correct. This process is important for the BCP, as the program uses this demographic information as part of case confirmation. Hospital staff enter select birth defect data into a different database, the NH Vital Record Information Network (NHVRIN). Any birth defects data used by the BCP for case completeness, which comes from NHVRIN, must come from a separate report run by the MCH epidemiologist. BCP personnel manually input any birth defect data that has been collected through abstraction.

 

Capacity Building for Improvements to Surveillance

 

The BCP and EHDI Programs have recently upgraded their shared database to an integrated management system (IDMS) which will include the Newborn Screening (NBS) program’s critical congenital heart defect (CCHD) screenings. This enhanced database shared by the three programs allows for expanded collaborations with birth hospitals to collect birth defects data. This collaborative project will allow birth defects and their possible contributory factors to adverse birth outcomes to be collected near real-time, prior to hospital discharge. This feature will enhance birth defects surveillance by adding to the data sets available to actively acquire cases for investigation. The upgraded database will serve to simplify BCP surveillance, as well as all MCH newborn screening program activities, by using one system for all the programs that interact with many data systems to bring a single point of reference for information on a NH birth.

 

Relationships with hospitals pursuant to record review and data collection continue to evolve. The COVID-19 pandemic posed many challenges for hospitals, with staff being furloughed leading to reduced staff capacity in health information management departments across the State. While most of the 19 birth hospitals have fulfilled requests for record review, there are three (3) hospitals that have not provided information for this reporting cycle. The BCP submits an annual request for record review to all NH birth hospitals. Requests to the hospitals who were unable to fulfill the previous request have gone out again adding the new data collection period to the previous request.

 

Educating the Public and Providers Concerning Birth Defects and Birth Defects Prevention Among Adults Desiring Pregnancy

 

The BCP continues to utilize social media as an avenue to reach women of childbearing age and women who are pregnant or desire pregnancy, and their partners. Messaging focuses on preventative measures before and during pregnancy to reduce the likelihood of birth defects. Using campaigns associated with monthly awareness activities, such as World Birth Defects Day, Folic Acid Awareness Week and National Birth Defects Awareness Month, BCP offers information on select topics.  

 

 

NNEPQIN provides up-to-date information to the perinatal provider community and holds several educational conferences throughout the year. This communication avenue serves to disseminate information to this group via presentations or written material. The BCP has ongoing collaboration with the Northern New England Perinatal Quality Improvement Network (NNPQIN), through the BCP Advisory Committee.

 

Connecting Affected Children and Families to Appropriate Social Services

 

The BCP is able to offer information to families impacted by birth defects via the BCP Registry, which has an opt-out function. Information about the Bureau of Family Centered Services (BFCS) and New Hampshire Family Voices (NH FV), along with directions for contacting these service providers, are included in the opt-out material mailed to each identified family. Parents are able to self-refer to services by contacting the BFCS and/or NH FV directly. The BCP has identified connecting families to services as a project to work collaboratively on with the BFCS during this upcoming year.

 

 

[1] Centers for Disease Control and Prevention, Sudden Unexpected Infant Death and Sudden Infant Death Syndrome, Data and Statistics. Retrieved on 8/18/2021 from https://www.cdc.gov/sids/data.htm

[2] Centers for Disease Control and Prevention, Sudden Unexpected Infant Death and Sudden Infant Death Syndrome, Data and Statistics. Retrieved on 8/18/2021 from https://www.cdc.gov/sids/data.htm

[3] Christianson A, Howson C, Modell B. March of Dimes global report on birth defects: the hidden toll of dying and disabled children. The March of Dimes Birth Defects Foundation. 2006. http://www.marchofdimes.org/materials/global-report-on-birth-defects-the-hidden-toll-of-dying-and-disabled-children-executive-summary.pdf.

[4] Centers for Disease Control and Prevention. Update on Overall Prevalence of Major Birth Defects–Atlanta, Georgia, 1978-2005. MMWR Morb Mortal Wkly Rep. 2008;57 (1):1-5.

[5] T.J. Mathews, M.S.; Marian F. MacDorman, Ph.D.; and Marie E. Thoma, Ph.D., Division of Vital Statistics, “Infant Mortality Statistics From the 2013 Period Linked Birth/Infant Death Data Set”, National Vital Statistics Reports Volume 64(August 6, 2015): Number 9.

[6] Russo CA, Elixhauser A. Hospitalizations for Birth Defects, 2004: Statistical Brief #24. In: Healthcare Cost and Utilization Project (HCUP) Statistical Briefs. Rockville (MD): Agency for Healthcare Research and Quality (US); 2006