During 2018, KY had targeted efforts to address two NPMs. NPM # 4: A) Percent of infants who are ever breastfed, B) Percent of infants breastfed exclusively through six months and NPM # 5: Percent of infants placed to sleep on their backs. Both NPMs target KY’s efforts to address risk factors and protective factors to reduce infant mortality.

Infant Mortality:

Infant mortality remains the single best indicator of the health of a state, and in KY, has been identified as a priority need for the perinatal/infant health domain. The infant mortality rate in KY has not shown the degree of improvement seen in the national infant mortality rate. KY’s most recent rate is 6.7, compared to the national rate of 5.8. This is in fact a slight increase to the 2015 rate.

Racial disparity exists with the rate for black infants (11.1 per 1,000 live births) being almost twice the infant mortality rate of white infants (6.4 per 1,000 live births).

The more concerning rates for infant mortality are located in the southeastern areas of the highest poverty-stricken areas of KY with rates varying from 5.2/1000 to 9.76/1000 in a district bordering an urban locality. ADDs with lower rates have commonality of higher rates of teen pregnancy, smoking and substance use during pregnancy, NAS, and late prenatal care. Social determinants such as transportation, housing, access to medical care, and rurality further create barriers for improving rates.

Title V continues to provide gap filling services for pregnant KY mothers and their infants during the perinatal period, including prenatal care as described in the previous section, and assuring access to appropriate levels of perinatal care for all mothers and infants through referral networks between LHDs and community providers. MCH has worked with the Cabinet’s Office of Health Policy to include the most recent recommendations from the National Guidelines for Perinatal Care in the State Health Plan. In addition, MCH provides Title V funding to the state’s two university-based regional perinatal centers to monitor outcomes of the highest risk infants and compare KY’s outcomes to national data.

Nationally, the Infant Mortality CoIIN has identified risk appropriate care for high-risk infants and mothers, safe sleep, breastfeeding, prematurity and EED prevention, smoking cessation, and social determinants of health as primary strategies for addressing infant mortality. KY MCH participated in each of these CoIIN projects to bring best practices to our state’s efforts in these areas.

Breast Feeding Promotion

KY elected to focus on NPM #4 A) Percent of infants who are ever breastfed and B) Percent of infants breastfed exclusively through 6 months.

Various formats used to provide breastfeeding education to the public and health care providers include handouts, regional/local billboards, internet and movie theater advertisements, classes, and community events. Health care professionals and hospitals receive education through newsletters, web-based and on-site face-to-face trainings, and conferences. During 2018, three breastfeeding conferences held for health professionals had approximately 175 people attend at least one of the conferences. These annual events have the additional benefit for community level staff to network and share successful endeavors from across the state with each other. Four regional coalitions promoted breastfeeding through social media, educational conferences, health professional and hospital education, outreach, media events, and community events.

Per the 2017 PRAMS Cohort:

• 93% of PRAMS mothers intended to breastfeed their child

• Four out of five PRAMS mothers reported ever breastfeeding their infant
• One out of ten PRAMS mothers reported not producing milk was a barrier to breastfeeding

Ten Steps to Successful Breastfeeding:

KY adopted the evidence-based practice: Ten Steps to Successful Breastfeeding Promotion to improve breastfeeding rates. To reduce barriers for incorporation of each step into practice and policy, regional breastfeeding coordinators provide education, training, and support to hospitals. For hospitals that wish to obtain Baby Friendly Hospital designation, they must include all steps in practice and policy. The KY WIC office surveyed birthing hospitals to determine what assistance or technical support would be most beneficial to increase the number of steps implemented and to determine how many were seeking a Baby Friendly Hospital designation. In 2018, 35 hospitals received technical assistance towards increasing steps and/or working toward a Baby Friendly designation.

Breastfeeding initiation rates in 2005 were 52.7%.  In 2016, this had risen to 70.4% with continued increase to 70.9% in 2017 (KY OVS data). Initiation rates improved with older maternal ages and higher levels of education attained, as shown in the figure below.

Duration rates of mothers’ breastfeeding their 6-month-old babies’ remains low at 21.1% reported for 2015 births (Centers for Disease Control, 2018). A geographical view of the state reveals the lowest initiation rates are in the southeast part of KY.    

Even though improvements in breastfeeding have been made over time, KY still remains well below the nation (51.8%) in terms of the percent of mothers who breastfed their infants at six months of age. Currently four Baby Friendly hospitals deliver 20.3% of the babies born in KY. KY has a limited number of International Board certified lactation consultants, which limits resources for mothers seeking assistance when breastfeeding problems arise. Many KY workplaces do not support breastfeeding when the mother returns to work. Limited peer counselor availability further affects breast feeding support and duration

Regional Breastfeeding Coordinators provide breastfeeding training, technical support, and education to more than hospitals. They have community wide focus reaching health departments, nurses, and college and high school students. These trainings promote and encourage best practices, breastfeeding duration with supports after birth resources, and the return of the mother to class or work. The WIC Program staff and Regional Breastfeeding Coordinators provide support to birthing hospitals to increase the number implementing kangaroo care in their facilities. Currently, approximately 95% of KY’s birthing hospitals have implemented kangaroo care.

WIC participants may receive hospital grade, single user, and manual breast pumps to support breastfeeding duration. Over 100 health professionals completed the education modules reinforcing breastfeeding promotion, education, and three-step counseling. Approximately 150 individuals completed an online breastfeeding module targeting childcare providers released in 2017.

The Breastfeeding Peer Counselor Program consists of paraprofessionals who were previous WIC participants and have successfully breastfed at least one infant. These peer counselors provide basic breastfeeding information and encouragement to WIC pregnant and breastfeeding mothers. Currently, 28 LHD WIC agencies, covering 72 counties, have a Breastfeeding Peer Counselor Program.

There is a considerable amount of controversy among breastfeeding advocates around bed sharing to promote breastfeeding. This contradicts recommendations for room sharing, but not bed sharing, for infant safe sleep. MCH promotes the ABCDs of safe sleep and recommends room sharing.

• In 2019, one successful measure was the establishment of the Pregnant Workers Act (KRS 344.030-.10) which prohibits employment discrimination in relation to an employee’s pregnancy, childbirth, and related medical conditions. It required reasonable accommodations for the employee and is the first lactation accommodation requirement in KY. This law becomes effective June 27, 2019.

Nutrition Activities:

KY currently provides Medical Nutrition Therapy (MNT) services in many local health departments. MNT is nutrition counseling provided by registered dietitians (RD/RDN) and certified nutritionists (CN) on specific medical conditions and chronic diseases.  MNT may be an individual education session or group education.  In 2018, LHDs reported 2,756 initial MNT visits, 535 follow-up MNT visits, and 23 group MNT visits. The top five reasons for MNT visits included: obesity, diabetes, overweight, underweight and gestational diabetes. The local health departments also provide basic nutrition education in the clinic, in the community one on one, or in a group setting.

The KY WIC Program offers the WIC Farmer’s Market Program (WIC-FMNP) in multiple areas across the state. WIC Participants 5 months and older may receive $16 dollars in WIC-FMNP coupons to spend on KY grown produce at their local farmer’s market. This program is available in 92 counties.

Coffective®:

In 2018, to improve breastfeeding engagement and duration in KY, the Nutrition Services Branch and the MCH Title V program collaborated to evaluate current breastfeeding practices in the community, hospital, LHD, and parent level. Coffective® (Community + Effective) strives to empower the community to help families reach their breastfeeding goals. Coffective® defines community as a composition of mothers, nurses, providers, peer counselors, WIC providers, home visitors, leaders, hospitals, and more.

Coffective® had face-to-face meetings with birthing facility representatives, HANDS representatives, WIC staff, LHD directors, MCH Title V LHD coordinators, breastfeeding coalitions, and other providers to conduct a needs assessment specific to their breastfeeding engagement successes and barriers. Follow-up calls were made to contacts with each Regional Breastfeeding Coalition to increase engagement with their membership.

MCH Nutrition services expects to have results of the various surveys available in mid-late fall, 2019. Plans are in place for this data to be presented at the annual MCH conference.

Healthy Start

Louisville Healthy Start is one of 100 HRSA-funded programs throughout the US working to eliminate disparities in perinatal health. For more than two decades, Louisville Metro Healthy Start has invested in the health and wellbeing of Louisville’s families with the goal of reducing health disparities, including infant mortality, by providing direct services to pregnant and postpartum women, their infants and fathers. The rates for African Americans in west Louisville neighborhoods are double the rate than that of Louisville Metro as a whole and more than triple the rate for Caucasians.  

Healthy Start approaches pregnant women in the target neighborhoods through home visits and other outreach methods to make sure that women begin prenatal care during the first three months of pregnancy and that they continue to get consistent care throughout pregnancy and after delivery. Healthy Start continues to work with families after the birth of the baby until two years of age through such programs such as parenting classes, helping them with skills, and understanding the development of their babies through their first years of life.

Collaboration with Title V MCH is encouraged by HRSA leadership, and Louisville Metro Healthy Start benefits from this teamwork in multiple ways. The MCH Coordinator provides classes for Healthy Start and local HANDS families about child passenger safety. Classes offered at the bi-monthly Healthy Start baby showers include information about safe sleep practices, abusive head trauma, and smoking cessation. The financial partnership with MCH Title V allows Louisville Metro to match purchases for Cribs for Kids® safe sleep kits. The MCH Coordinator participates in several collaborative partnerships that support maternal and infant health, including the Pediatric Behavioral Mental Health Alliance, Safe Kids Coalition, Safe Families in Recovery, and, and the Plan of Safe Care; and, she leads both the Louisville FIMR and Child Fatality Review.

Finally, Louisville Metro Healthy Start is a multi-year March of Dimes Healthy Babies are Worth the Wait partner, receiving grant funding, training, and support for implementation projects designed to reduce prematurity and improve birth outcomes for women of color in Louisville. A representative from Healthy Start is a member of the SDoH CoIIN.

Social Determinants of Health CoIIN

The Louisville Metro Healthy Start leader chairs the KDPH/MCH team for KY’s Infant Mortality CoIIN for SDoH and coordinates efforts with MCH partners including the Office of Health Equity, MOD, and KY Perinatal Association. The goal of this team is to change policies and practices to reduce disparities in health outcomes by addressing social determinants of health and social bias. In 2018, Healthy Start CoIIN combined with MCH, MOD, and KPA to host a two-hour training titled, “How Biased Am I?”  This training has been repeated at regional meetings in partnership with MCH.

Over the past year, KY has participated in several webinars, learning labs, and action calls to build its knowledge and understanding of social determinants and the impact on population health and to identify areas of intervention that is most conducive to achieving equity in birth outcomes in KY.

HANDS

The HANDS program continued in improving infant outcomes and reducing infant mortality overall in the families served. Prenatal education provided promotes delivering a healthy baby by encouraging a healthy lifestyle and follow-up with prenatal providers. After birth, parenting education continues to support raising a healthy child in healthy, safe environments. In addition, families served through the MIECHV grant continue to show improvements in maternal and newborn health, school readiness and achievement, increased screening for domestic violence and referrals for victims of domestic violence, family economic self-sufficiency, referrals for other community resources, reductions in mother and child visits to the emergency room, and incidence of child injuries requiring medical attention.

Safe Sleep Surveillance Annual Report

KY continues to focus on assuring safe sleep activities and review of cases meeting definition for the SUID case registry. KY chose to target NPM # 5: Percent of infants placed to sleep on their backs.

In 2012, MCH conducted a review of all SUID cases from death certificate records and medical examiners reports to identify the presence of risk factors including the sleep environment. The CDC broadened the focus on infant deaths that occur while sleeping, to include not only SIDS, but also accidental suffocation and strangulation in bed and undetermined causes. These causes of infant death all fall under the designation of Sudden Unexpected Infant Death. The history of SUID review in KY is:

• September 2015, KY was awarded SUID Surveillance Grant
• 2016, MCH began collecting case data and reports
• 2017, 83 infants were identified meeting case definitions and SUID became the second leading cause of death among KY’s infants.

The SUID grant promotes the early identification of SUID cases, as well as a comprehensive death scene investigation (DSI) and multidisciplinary case review, to identify opportunities for prevention. SUID Case Registry work in KY has focused on enhancing the capacity for local teams to conduct SUID case reviews in addition to the development of a state level multidisciplinary review team to review all SUID cases not reviewed at the local level.

A data system has enabled staff to monitor the timeliness of all data sources as well as the risk factors associated with each case and has served as a foundation for the discussion of quality improvement. Six multidisciplinary trainings held across the state focused on DSI, comprehensive case review, and photo documentation. Since the definition, change to SUID, KY has had 70 or more SUID cases identified annually.

While 2018 data is preliminary, SUID deaths appear to be trending down. To determine if this result is related to the safe sleep campaign, KY will need to review the data for a minimum of 5 years after the campaign.

The 2017 PRAMS Cohort information found:

• 95% of mothers had a health care professional recommend placing their infant on their back to sleep
• Three out of four of these mothers reported following this recommendation

 

During 2016-2017, 186 infants died suddenly and unexpectedly in KY. Of those cases, 63% died before their 4th month of life. This infographic shows additional risk factors present in SUID cases during 2016-2017.

Safe Sleep Campaign:

In response to surveillance data and information from KY’s External Panel for the Review of Child Fatalities and Near Fatalities, KY began strategically planning to address the alarming number of deaths from co-sleeping/bed-sharing.

At the 2016 KY State Fair, KY surveyed attendees about safe sleep practices and beliefs. After review of results, it became evident; KY needed to add a “D” for Danger/Distraction to the campaign. The opioid epidemic in KY was having an impact on infant deaths and it was determined rest or sleep deprivation, distraction, and impairment from substances impose a significant danger to the ability of a parent to assure a safe sleep environment for the infant.

 

KY was the only state to incorporate a “D” into safe sleep messaging. The campaign focal points became:

A is for Alone: Stay close, sleep apart

B is for Back: Babies should sleep on their backs at night and for naps

C is for Crib: Babies should sleep in a clean, clear crib

D is for Danger: Parents need to be aware and not impaired when they care for their babies

 

The Safe Sleep KY Educational Campaign partially funded by an AMCHP Birth Outcomes began in phases in 2016. Many portions of this campaign continue today. LHDs, hospitals, and community partners frequently request materials developed during the campaign. One valuable lesson learned was the need to refresh materials to assure ongoing engagement. Beginning in 2018, new materials were developed and refreshed. A newly developed crib card is in pilot with several birthing hospitals across the state. The card provides the ABCDs of safe sleep, reinforcing the message developed during the campaign. It provides the vital birth information of the newborn for the crib.    

           

Additional educational materials are in development for use during car seat checks and EMS runs, and KY State Police waiting areas and for distribution by community partners. All materials were translated into Spanish this year. Safe sleep magnets, door hangers and diaper bag tags are mailed to birthing hospitals across the state as free giveaways for new mothers.

During the campaign, MCH established a Safe Sleep KY Facebook page, website page, and email box. This page has remained active with a health program administrator monitoring all sites and responding with best practice information and promotional updates about safe sleep. During the previous year, the Safe Sleep KY Facebook page had: 18,122 reach, 1,037 engagements, and 158 post engagements. More information can be found at www.safesleepky.org.

Safe Sleep Culture and SDoH: 

The question remains, “why would parents choose unsafe sleep behaviors that do not follow the recommendations from their provider?” In KY, culture and following the childrearing example previously set by grandparents, aunts, or others certainly plays a part in the decision to co-sleep; placement on infant for sleep, and adding bumper pads, quilts, or other soft bedding to the crib. Appalachian culture relies heavily on familial connections to tradition, quilting, and honoring the maker of the quilts used for an infant. Responses to this question elicit the statements, “I did this and it did not cause crib death”.

 

Social Determinants of Health such as poverty, lack of safe sleep education, lack of a crib, substance use by provider or in the home, birth to a teenage mother, and other systems barriers contributed to SUID risk in KY. To address culture, SDoH, and other factors, MCH had to take a multi-pronged approach to the campaign.

 

MCH Evidence Informed Strategies at LHD’s

Title V funding supports evidence informed strategies specific to addressing infant mortality. To receive Title V allocations, LHDs are required to choose at least one infant mortality strategy and are encouraged to be creative with the packages to adapt and fit them to their local communities.

Evidence Informed Strategies chosen by LHDs:

• Safe to Sleep for Community Partners: 26
• Safe to Sleep for Child Care Providers: 18
• Prevention of Abusive Head Trauma Package: 27
• Cribs for Kids for Community Partners: 22
• All Safe Sleep Packages: 8

The Cribs for Kids package requires the LHD to find a match with a local community stakeholder to purchase an equal number of cribs. In 2018, 36,591 parents, caregivers, or other community members received safe sleep education and 743 crib kits have been distributed.

Perinatal Quality Committee

The Perinatal Quality Committee mentioned in the Women/Maternal Health Domain narrative also made recommendations for infant and specifically infants with NAS that were:

• Require NAS reporting by birthing hospitals
  • KY has had an established NAS reporting registry since 2015
• Develop a standardized model for identification and treatment of NAS
  • MCH continues in development phase and will work with KPQC (once established) to determine current practices statewide and make recommendations for best practices for future dissemination
• Educate parent/alternate caregivers of all newborns on PAHT and Safe Sleep practices prior to discharge after
  • Birthing hospitals utilized various trainings for both topics
• Encourage rooming in for the mother with an infant with NAS
  • Birthing hospitals present at the KHA meeting noted they encourage rooming in and use the opportunity to model safe sleep and promote breastfeeding with mothers

KY Center for the Prevention of Neonatal Abstinence Syndrome

Established through a contractual agreement with the University of KY in 2016, a committee of experts was tasked to develop a manual for evidence-based practices for diagnosis, treatment, or management of NAS. Chapters to be developed were:

• Pre-pregnancy
• Screening for substance use during pregnancy
• Management of opioid-dependent women during pregnancy
• Intrapartum and postpartum management
• Infant care
  • Discharge planning and transition to community services
  • Primary care for infants affected by perinatal opioid use
  • Assessment and treatment (pharmacologic and non-pharmacologic) for infants with NAS

The guideline for infant care was received in early 2018. Secondary to the university request that they do not have resources to continue this initiative, this contract ended in 2018.

Neonatal Abstinence Syndrome (NAS)

In KY, data from hospital discharge records indicate the number of cases of NAS has increased more than 20-fold in the last decade (46 in 2001 compared to 1,114 in 2017). Mandatory reporting of NAS to MCH was instituted in July 2014. Annual reporting for NAS began in 2015 and to date three reports have been published (see attachment).

Per the KY NAS registry, in 2017 the rate of NAS was 22.35/1,000 live births. This rate is much higher than nationally reported rates. Rates are highest in Appalachian areas of the state with some areas reaching 65 cases per 1,000 live births. Mothers of infants tend to have lower levels of education, be unmarried, and have more children, which may suggest lower socioeconomic stats, a lack of social support, or reduced access to services. Approximately, 63% of cases in the registry used more than one type of substance during pregnancy.

KY is at the center of an injection drug epidemic that has brought with it the highest HCV infection rate in the country. Hepatitis C was reported in about 35% of this population.

Infants with NAS are twice as likely to have a low birth weight and three times as likely to be admitted to a neonatal intensive care unit. Tobacco and alcohol use co-occur with substance use at higher rates compared with the rest of the population, which could further affect the health and development of these infants. Infants with NAS had a longer delivery hospitalization: 12.5 days as compared to 3.8 days for infants without NAS.

More than 80% of infants with NAS were referred to the Department for Community Based Services, and more than 75% of those cases were accepted. Data from other KY programs indicates that NAS is a risk factor for abusive head trauma and unsafe sleep. Further studies are needed on maltreatment and mortality among NAS cases.

To prevent NAS, the KY Department for Public Health recommends encouraging MAT programs, implementing a Plan of Safe Care, encouraging education on abusive head trauma and safe sleep for parents, implementing safe sleep modeling by healthcare and childcare providers, increasing enrollment in services such as WIC and home visiting program, and improving access to long-acting reversible contraception.

Plan of Safe Care:

The DBHDID, in collaboration with MCH and multiple other community partners, has been working on an initiative focused on developing a comprehensive system of care for women of childbearing age and their families, who are at risk of using drugs or alcohol.

During 2017-2018, MCH hosted six regional meetings with the KY Perinatal Association (KPA) to discuss the plan of safe care for infants with NAS. The topics focused on

• NAS overview data, and treatment

• Services provided by one treatment program for mother and infant
• Safe Sleep and Plan for Safe Care
• Resources for Mothers and Children

These meetings had an average attendance of 50-100. In attendance were representatives from multiple local agencies with a desire to learn more on this subject and begin work to address helping the mothers and newborns.

Healing Empowering and Actively Recovering Together (HEART):

From these meetings, MCH launched the pilot program, HEART in Floyd County. With 70 of every 1,000 births diagnosed with NAS, Floyd County represented one of the neediest populations in the state. One benefit of choosing this site was the active community support found within the Big Sandy NAS Coalition. This program design meets the needs of pregnant and parenting women who have Opioid Use Disorder (OUD) and their young children through a support group experience. It includes supports for mother and child akin to “one-stop-shopping”. Through this experience, participants build protective factors to minimize the opportunities for stress and feelings of being overwhelmed. This parent-driven and strength-based program has resources for physical and mental healing, education and skill building for nurturing parenting, and the necessary supports for success in long-term recovery.

Initially, Highlands Regional Hospital in Floyd County referred all mothers who delivered a baby with a NAS diagnosis to the Floyd County local health department Health Access Nurturing Development Services (HANDS) program. Enrollment is now open to other referral sources. A HANDS home visitor and peer support coach met with the mother in the hospital or made contact if already released to offer HANDS home visitation services and/or enrollment in the HEART program. The HEART group consists of six to ten mothers who, along with their children, meet every Tuesday from 10 a.m. to 1:00 p.m. at a local community church. HANDS home visitors, trained in a group socialization curriculum, and co-led the group experience with assistance from an Early Childhood Mental Health Specialist, OUD Peer Support Specialist, and a Regional Program Coordinator. During the three-hour meeting, parents learn parenting best practices from Growing Great Kids Curriculum and Nurturing Parenting Curriculum. Parents have time to practice these new skills with their infants under the guidance and support of HANDS providers. In addition, parents learn positive coping strategies using KY Strengthening Families Protective Factors Framework. Finally, area providers attend sessions on a rotating schedule to provide critical mental and physical health services such as well-child check-ups, immunizations, nutrition education, easy access to community resources, tax preparation and other services as identified by participants.

There are five overarching goals of the HEART program:

1. Infrastructure: Increase coordination of care for parenting and pregnant women with OUD by integrating HANDS with OUD services and supports
2. Prevention: Utilize an early detection screener to help prevent opioid misuse and abuse in Floyd County
3. Treatment: Increase connectivity to OUD Treatment Service
4. Recovery: Provide psycho-education on relapse and prevention and increase retention for long-term recovery
5. Harm Reduction: Every child and family that participates in this program builds strong protective factors to buffer toxic stress and ACES

The first group meeting was in September 2018. Engagement was slow at first, however, with dedicated, face-to-face and encouragement from the peer support coach, more women attended consistently. At this point, a father’s group now meets. Eventually, a local judge attended to “find out what is going on, to make such improvements”. Because this group is now at capacity, Floyd County LHD is creating a Thursday group and has identified a third site elsewhere in the county. Preliminary evaluation data indicates that the participants highly value the social connections built through the program and the non-judgmental support they receive.

The widespread nature of the substance abuse epidemic in KY is a challenge. When focusing efforts on treatment options for pregnant and parenting women, the need far outweighs capacity. From a data standpoint, there also are challenges to obtain accurate numbers using administrative data sources. Another significant concern is that some babies with NAS are discharged from the hospital before onset of symptoms, resulting in a potentially high-risk situation for the infant. NAS has been identified as a risk factor for infant deaths, especially for sudden unexpected infant deaths with unsafe sleep practices, as well as pediatric abusive head trauma. These findings highlight the critical need for a comprehensive plan of safe care that assures a safe environment after discharge from the birthing hospital. Lessons learned from other counties were not as successful. Madison County created a group of community stakeholders and designed a manual to be given to the provider for tracking purposes with various providers prior to disbanding. More regional meetings have been ongoing. In May 2019, Laurel County hosted a community meeting to begin discussions with MCH to use the business model used by Floyd County to launch HEART in their area.  

The widespread nature of the substance abuse epidemic in KY is a challenge. When focusing efforts on treatment options for pregnant and parenting women, the need far outweighs capacity. From a data standpoint, there also are challenges to obtain accurate numbers using administrative data sources. Another significant concern is that some babies with NAS may be discharged from the hospital before onset of symptoms, resulting in a potentially high-risk situation for the infant. NAS has been identified as a risk factor for infant deaths, especially for sudden unexpected infant deaths with unsafe sleep practices, as well as pediatric abusive head trauma. These findings highlight the critical need for a comprehensive plan of safe care that assures a safe environment after discharge from the birthing hospital.

KY Pregnancy Risk Assessment Monitoring System (PRAMS)

KY received funding through a cooperative agreement to become a CDC PRAMS state in May 2016. PRAMS is a population-based random survey of women who have recently had a live birth. PRAMS data collects information on maternal attitudes and experiences before, during, and shortly after pregnancy and serves to fill gaps in existing MCH data sources. KY has recently entered into the third year of a five-year cooperative agreement for PRAMS. PRAMS data collection began in 2017 and KY has completed two full years of surveying. Epidemiology staff are in the process of analyzing the data for the 2017 cohort. The percentage of survey returns was higher than averages reported across other states, an admirable performance for a surveillance program in its first year. KY will disseminate the results at the annual MCH conference in the fall of 2019.

The KY PRAMS program was awarded additional supplemental funding in October 2018 for an opioid survey and an additional call back survey. The survey will sample mothers in counties with a high number of overdose deaths. Once the mothers complete the survey, they will have the option to participate in an additional call back survey when their infant is 9 months of age. The purpose of these supplemental questions is to assess additional risk factors associated with substance use before, during and after pregnancy. These data will assist states in understanding the issues facing these mothers and babies. The counties included in the opioid survey are included in the map below:

Promotional materials of various types were developed and printed to help raise awareness of the KY PRAMS survey. PRAMS distributes materials to local partners, community providers, stakeholders, and select professional organizations with a focus on birthing hospitals.

KY PRAMS faces budgetary challenges for sustainment of the survey. The Division of the CDC that funds the state-level PRAMS programs received a funding reduction by Congress. Therefore, all CDC funded PRAMS states received a 10% reduction in funds for year two of the grant. KY, along with the other PRAMS funded states, had to reduce its budget by 10% for grant year two. It is unknown at this time whether funding cuts will continue in the future. In addition, due to these budget cuts, contracted staff at the CDC serving as state project officers became part of a workforce reduction. States served by these project officers were re-assigned to non-contracted staff for program management and technical assistance. KY recently began working with the newly re-assigned project officer. To continue the highly effective manner in which KY PRAMS is functioning, PRAMS funding is augmented by Title V funds.

Newborn Screening:

Newborn Screening (NBS) is a mandated service provided by the state of KY. Parents have ability to ‘opt-out’ and refuse screening. NBS rates for both metabolic/genetic blood spot screening and critical congenital heart defect (CCHD) screening are completed for 98% or greater of KY newborns annually. Beginning in 2017, the Division of Lab Services (DLS) contracted with a private courier to collect blood spot specimens across the state and deliver them to the lab. Previously, DLS utilized the US mail and Fed-Ex services for shipment of specimen. This created a delay in the ability to timely respond to some disorders, and increasing risk of death for newborns with critical disorders. By using the courier service, DLS has successfully improved timeliness for receiving, processing, and reporting results out on specimens.

MCH houses the Short-term NBS follow-up program. This team assures timely notification to the university referral centers for early evaluation and diagnosis. This team completes follow-up and notification to parents and providers for any specimens requiring additional labs or repeat specimens. Rates for lost to follow-up for repeat labs was impacted by an inability to locate provider and lack of provider notification of case closure to the state, despite being required in regulation.

To address the rising rate of lost to follow-up; changes were made in the follow-up procedures. The previous process included an immediate telephone notification to provider completed by the DLS, and then NBS follow-up mailed a parent letter at day 10 after initial notification, a certified parent letter on day 20, and closed the case as lost to follow-up if no contact or result received on day 30. The new process added an additional letter at day 5. The provider of record, if located, contacted by telephone to notify need for repeat labs prior to closure of lost to follow-up. In 2018, NBS follow-up, in collaboration with both university referral centers, developed standing orders for evaluation of repeat lab results received for newborns evaluated for congenital hypothyroidism. This protocol and orders will allow for timely evaluation for local primary providers and for faster case closure or referral to pediatric endocrinology for longer follow-up and evaluation. It is anticipated this new procedure will also help to reduce the lost to follow-up rates.

In 2018, NBS began screening for X-linked adrenoleukodystrophy (X-ALD). Plans are in place for adding Spinal muscular atrophy (SMA) screening beginning in the fall of 2019. Both disorders affect the nervous system of children. With the addition of these disorders, KY now screens for 56 disorders including CCHD.

Hearing loss is the most common birth defect, occurring at a rate of three in every 1,000 children. The OCSHCN administers newborn hearing screening program. The Early Hearing Detection and Intervention (EHDI) screening surveillance is located at the OCSHCN. The goal of KY’s newborn hearing screening program is to identify congenital hearing loss in children by 3 months of age and assure early intervention by 6 months of age. In KY, 98.3% of newborns receive a screening prior to discharge from the hospital. This rate is slightly above the national average of 98%.

This program provides supports for birthing hospitals to:

• Establish protocols for testing, reporting and training
• Set standards for screening based upon national best practice standards of care
• Provide quality assurance consults from audiologists

Family support include:

• Care coordination for tracking and follow-up for infants referred after screening
• Audiology consultation to help locate diagnostic, medical management, hearing aid assessment, and funding services and linkage to early intervention services
• Direct audiology services at 11 OCSHCN regional offices
• Connections to parent support groups

 

Emergency Preparedness:

The KDPH Continuity of Operations Plan (COOP) has a detail sheet for how KY will assure the newborn screening metabolic screen and CCHD processes continue during an emergency.  COOP also addresses programmatic plans for maintaining metabolic foods and formula services.