The Bureau of Family Health (BFH) provides services to the perinatal/infant domain through a combination of Title V, other federal, and state funding. Within the BFH, programs serving this population domain are split between the Division of Newborn Screening and Genetics (DNSG) and the Division of Child and Adult Health Services (DCAHS). Title V funds the breastfeeding awareness and support program, the safe sleep program, newborn screening program staff, and the newborn screening data system. Additionally, the BFH continues to supply educational materials including a training video, pamphlets, and a commitment statement to hospitals and birthing centers in accordance with Pennsylvania (Pa.) Law 2002-176 on Shaken Baby Syndrome. State matching funds are used for the agreement with the contracted newborn screening lab, which includes payment for the disorders on the mandatory screening panel, grant agreements with the treatment centers, and a phenylketonuria formula program. In addition, in 2024, the DNSG received Health Resources and Services Administration (HRSA) multiyear funding for activities related to newborn hearing screening.

 

Three laws established the newborn screening program in Pa.: Newborn Child Testing Act, Newborn Child Pulse Oximetry Screening Act, and Infant Hearing, Assessment, Reporting, and Referral Act. These laws have provided for the creation of the Newborn Screening Follow-up Technical Advisory Board and the Infant Hearing Screening Advisory Committee. These committees provide recommendations, guidance, and support to the newborn screening program.

 

Pa. experienced hospital closures and an expansion in midwifery services during the pandemic that continued through 2023; 2023 ended with 87 birthing hospitals/free standing birthing centers and 137 midwives performing deliveries. Based on newborn screening data, 126,578 infants were born in Pa. in 2023, with 95.8% of births occurring in hospitals and free-standing birth centers, and 4.2% of births occurring in other settings (e.g., clinic/doctor’s office, home birth), these percentages are essentially unchanged from the previous year. Newborn screening encompasses three types of screenings: dried blood spot, hearing, and critical congenital heart defects (CCHD). In 2023, the DNSG’s contracted laboratory, Revvity (formerly PerkinElmer Genetics) performed 125,848 (99.4%) initial dried blood spot screenings. The number of infants receiving a hearing screening in 2023 was slightly less at 123,863 (97.8%). In addition, 122,891 (97%) newborns received a CCHD screening. The DNSG continues to hold a data share agreement with the Vital Records Registry to identify newborns with a birth certificate without the completion of the various newborn screenings. The Community Health Nurses within the DNSG provided case management services for newborns identified without screening results. After review, it was noted the driving factors behind babies not being screened were parental refusals and lost to follow up. One hundred percent of the lost to follow-up dispositions were home births, while 89% of the parent refusals to NBS were also home births. This presents a need to better educate midwifery providers about the importance of newborn screening and how to speak with their clients about it as well as give the providers the necessary resources to answer questions posed by a primarily Plain community, which includes the Amish. Due to religious beliefs, financial hardship, and cultural distancing, the Amish population are much more reluctant to agree to newborn screening testing when compared to their non-Plain community peers.

 

The infant mortality rate for Pa. was 5.5 per 1,000 live births in 2021. The rate for Black/African American infants was 11.0 per 1,000 live births in 2021, more than two times the Healthy People 2030 goal of 5.0 per 1,000 live births. The rate for Black/African American infants was higher than the rate for Latinx infants (5.7), which also did not meet the Healthy People 2030 goal, and more than double the rate for white infants (4.5). Centers for Disease Control and Prevention (CDC) WONDER data for Pa. shows that Black/African American infants die of sudden unexpected infant death (SUID) at more than twice the rate of white infants. In 2021, 9.8% of Pa. babies were born prematurely. The percent of low birthweight babies was 8.3. Health disparities persist again when stratifying low birthweight by race and ethnicity: Asian/Pacific Islander (9.0%) Black/African American (14.4%), Latinx (8.7%), white (6.9%), and multi-race (10.5%).

 

In February 2023, the BFH concluded Cohort 3 of the Child Safety Learning Collaborative (CSLC). The CSLC provided the BFH with the opportunity to learn about and apply quality improvement methodologies to infant and safe sleep programming to prevent SUID-related deaths. The BFH benefited from the small group size to engage with other states and quality improvement experts to identify opportunities for implementing quality improvement processes.

 

The BFH determined that continued participation in the CSLC SUID Prevention cohort would not move the BFH’s SUID prevention strategies forward enough to outweigh the demand on staff time that could be directly spent supporting SUID prevention strategies and initiatives. Since BFH began participation in the CSLC in 2018, one of the largest challenges was the safe sleep initiative grantee not having the staff capacity to participate in CSLC while also performing on-the-ground safe sleep initiative work. Should grantee staff capacity expand to be able to accommodate CSLC participation and the implementation of the safe sleep initiative work, the BFH will consider future CSLC participation. Four years of CSLC SUID Prevention participation has prepared the BFH to confidently and fully engage in SUID prevention work that will most effectively reduce SUID in Pennsylvania.

 

Priority: Reduce rates of infant mortality (all causes), especially where there is inequity

 

NPM 4: A) Percent of infants who are ever breastfed B) Percent of infants breastfed exclusively through 6 months

 

Strategy: Facilitate the adoption and implementation of implementation of the World Health Organization’s ten evidenced based ‘steps’ for breastfeeding within PA birthing facilities

 

Objective: Increase the proportion of PA birthing facilities that provide recommended care for breastfeeding mothers and their babies

 

ESM: Percent of facilities that progressed by one or more steps each fiscal year

 

Modeled after the World Health Organization’s Ten Steps to Baby-Friendly Hospitals Initiative, as well as similar initiatives in other states, the PA Breastfeeding Awareness and Support Program (program) has implemented its Keystone 10 Initiative (K10) in birthing facilities statewide. The program provides funding to the PA Chapter of the American Academy of Pediatrics (PA AAP) to administer the K10 Initiative. This voluntary initiative focuses on the adoption and implementation of the ten evidence-based steps to successful breastfeeding. The K10 Initiative began in March 2015 with 69 participating birthing facilities engaged in a three to five-year initiative to implement the ten steps to successful breastfeeding. In 2023, 83 of Pa.’s 87 birthing facilities were engaged in the K10 Initiative. The program’s goal was for 60% of eligible K10 facilities to complete at least one step by the end of 2023. This goal was not met, as only 24% (10 of 42 eligible facilities) completed at least one step. Much of this is because many birthing facilities have already completed all 10 steps and ongoing issues with COVID19 mitigation efforts and staffing shortages meant that other birthing facilities had challenges finding the resources to complete more K10 steps. Additionally, Pennsylvania has had several complete hospital closures and a number of hospitals have made the decision to shut down their labor and delivery facilities- many of which were Keystone 10 engaged facilities. The BFH’s Breastfeeding Awareness and Support Program (program) has begun to sunset the Keystone 10 program. The program will continue funding the PA Chapter of the American Academy of Pediatrics (PA AAP) to administer the Keystone 10 (K10) initiative through June 30, 2025.

 

According to a national study, the effect of maternity care practices on breastfeeding plays a major role in breastfeeding rates. Mothers in the U. S. are 13 times more likely to stop breastfeeding before six weeks if they delivered in a hospital not designated as Baby-friendly in comparison to mothers who delivered at a facility where at least six of the ten steps were followed. After the completion of the ninth year of the initiative, 55 hospitals have implemented six or more steps and 41 of those hospitals have completed all ten steps of the K10 Initiative.

 

Facilities participating in the K10 Initiative have been grouped into five regions and participate in regional biannual collaborative meetings. The 2023 collaborative meetings focused on an overview of the K10 and First Food programs, with breakout sessions focused on breastfeeding and postpartum mood disorders and the new CDC guidance on breastfeeding while HIV+. The collaborative meetings provided an opportunity for hospitals and organizations within the community to familiarize themselves with the resources available to refer mothers, babies, and families in their communities, ultimately building a warm referral network and increasing access to breastfeeding support resources. A web-based project management tool, Basecamp, is utilized to allow the regional collaboratives to share information, best practices, and pose discussion questions. In addition to the collaboratives, the program provided a 15-hour breastfeeding management course to staff members of facilities participating in the K10 Initiative.

 

The most common K10 barriers continue to be the lack of administrative support for staff implementing K10 and the length of time required to approve and implement the evidence-based steps. Multiple efforts have been implemented to overcome these barriers. Each facility has a designated champion who is aware of the importance of breastfeeding to both maternal and infant health. These champions are the driving force of each facility’s momentum. K10 regional facilitators are available to provide on-site technical assistance to facilities reporting lack of administrative support.

 

As the program moves to sunset K10 completely in June of 2025, the focus has turned to ongoing sustainability efforts to ensure that the program’s effects continue long after funding has ceased. These efforts include having K10 certified hospitals complete sustainability plans which were submitted to PA AAP for review and performing existing step reviews to ensure continued fidelity to the K10 program.

 

Strategy: Collaborate with the Safe Sleep Program to promote and support breastfeeding within each program

 

Objective: Annually identify and develop collaborative opportunities between the Safe Sleep Program and the Breastfeeding Program

 

ESM: Convene a meeting between the Safe Sleep Program and the Breastfeeding Program four times per year

 

As noted above, the BFH houses both the DNSG and DCAHS. The PA Breastfeeding Awareness and Support Program is administered by the DNSG, while the Safe Sleep Program is administered by DCAHS. These programs work closely with one another, as they serve the same population and collaborate with the same community partners. Increased breastfeeding, in combination with safe sleep practices, may serve to reduce the infant mortality rate.

 

The PA Breastfeeding Awareness and Support Program and the Safe Sleep Program met quarterly during 2023 to discuss and implement possible collaborative and educational efforts between the programs. Collaborative and cross educational actions taken during 2023 included: continuing to share safe sleep resources to First Food’s breastfeeding community partners via their monthly newsletter, Basecamp, and social media platform, and continuing to create and share cross educational materials on preventing sudden infant death syndrome (SIDS) through the intersection of safe sleep practice and breastfeeding to both programs’ grantees.

 

The PA Breastfeeding Awareness and Support Program, and the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) collaborate all year through an annual Breastfeeding Referral guide which is jointly updated and hosted on the breastfeeding website, updates from local WIC offices at each regional biannual collaborative, and ongoing meetings with program representatives.

 

Additionally, in 2022, the PA Breastfeeding Awareness and Support Program began an ongoing data collaboration with Pennsylvania’s Pregnancy Risk Assessment Monitoring System (PRAMS) program. The breastfeeding program continues to use PRAMs data to assess ongoing breastfeeding support needs throughout the state and to plan for future programming that centers health equity.

 

Strategy: Collaborate with community-based organizations to increase the breastfeeding initiation and duration rates statewide

 

Objective: Annually provide breastfeeding education, and community outreach to improve breastfeeding initiation and duration rates

 

ESM: Convene five regional breastfeeding collaborative meetings twice per year each year

 

ESM: Award 15 mini-grants to community partners to provide breastfeeding support each year

 

In 2020, PA AAP was awarded grant funding by the BFH through a Request for Applications to administer a program to increase breastfeeding support and awareness. In 2021, 2022, and 2023, PA AAP collaborated with community-based organizations and partners by hosting regional collaborative meetings for birthing facilities and community partners, providing breastfeeding education for populations with lower initiation and duration breastfeeding rates, and distributing mini-grants focused on improving initiation and duration breastfeeding rates in areas of need based on target population demographics.

 

PA AAP created a series of library story kits to be distributed throughout the state. These story kits focus on providing education to library staff members about how public libraries are safe spaces for breastfeeding parents and serve as an educational resource on breastfeeding for families. PA AAP also created a ‘Breastfeeding Welcome Here’ toolkit and guide for breastfeeding in the workplace and a guide for childcare centers to ensure they are breastfeeding friendly.

 

Additionally, PA AAP conducted 10 regional collaborative meetings in 2023. These biannual collaboratives educated and supported birthing facilities and community partners on breastfeeding best practices and policies as well as the Department’s K10 Initiative. These collaboratives also served as an avenue for professionals to network and brainstorm with peers to share knowledge and promote collaboration. Regions are the Southwest, Southcentral, Southeast, Northwest, and Northcentral/Northeast. Topics discussed during the spring 2023 collaboratives included EMPOWER competencies, introductions to First Food projects including Library Story Kit and the Breastfeeding Welcome Here Guide, updates from regional WIC offices, and conversation cafes/breakout rooms on topical subjects such as building a lactation room, building a local breastfeeding coalition, and education on bridge and donor milk. Topics discussed during the fall 2023 collaboratives included project updates from recent mini-grantee awardees, a review of the CDC’s updated guidance on HIV+ mothers and breastfeeding, and a presentation on breastfeeding and postpartum mental health issues and diagnoses.

 

PA AAP also provided breastfeeding educational opportunities to community partners in 2023. These opportunities included a statewide breastfeeding outreach event about the Providing Urgent Maternal Protections (PUMP) act, and a two part webinar series focused on improving lactation support in the workplace.

 

Lastly, PA AAP awarded 10 mini grants to community partners to provide breastfeeding support and education based on the demographic needs of underserved populations in communities with low breastfeeding rates. With the rise of inflation and the cost of many supplies and materials increasing, the number of mini grants was reduced from 15 to 10 to allow an increase in award amounts so that the selected awardees could continue to have the same impact in their communities. The selected mini grants had representation from each region in Pa. and focused on increasing breastfeeding initiation and duration rates. Projects of note include: a mini grant to provide breastfeeding classes and new mom café in rural Fayette county, a mini grant to fund breastfeeding classes and support in urban Pittsburgh, and a mini grant in Erie to increase access to certified lactation consultants for Black, Indigenous, and other People of Color.

 

NPM 5: A) Percent of infants placed to sleep on their backs B) Percent of infants placed to sleep on a separate approved sleep surface C) Percent of infants placed to sleep without soft objects or loose bedding

 

Strategy: Use Child Death Review data to inform infant programming

 

Objective: Annually increase the number of recommendations from CDR teams related to preventing infant death that are reviewed for feasibility and implemented each year

 

ESM: Number of CDR recommendations implemented (infant health)

 

A tool being utilized to address infant mortality rates is data from the local Child Death Review (CDR) teams. Each team makes prevention recommendations based upon findings from reviews of deaths determined to be preventable and reports those recommendations to the BFH.

 

Internally, the actionable recommendations from local teams concerning infant deaths are shared within the BFH and with other Department bureaus as appropriate. Additionally, the BFH reviews known partner agency programming to see if recommendations can be made to them.

 

In 2023,the BFH entered into an agreement with Safe Kids PA (see Child Health domain narrative for additional details). One of the agreement’s strategies is to provide support with prevention-related training and technical assistance to the local CDR teams to transform the findings of the local review teams into evidence-based and evidence-informed child injury prevention strategies, including SUID prevention strategies.

 

In 2023, the process was unable to identify an actionable recommendation for the infant health domain. In addition to providing training to local CDR teams to enhance the quality of recommendations, BFH has partnered with East Stroudsburg University to assess functioning of local CDR teams and data quality, including recommendations from local CDR teams. The assessment will lead to the development of a training and technical assistance plan to improve the performance of local CDR teams including the development of viable recommendations. The internal process for sharing local CDR team recommendations will be revisited once the assessment and plan are complete.

 

Strategy: Implement a hospital-based model safe sleep program

 

Objective: Increase the number of birthing hospitals implementing the hospital-based model safe sleep program by 3% annually

 

ESM: Number of hospitals recruited to implement the model safe sleep program

 

ESM: Percentage of infants born whose parents were educated on safe sleep practices through the model program

 

ESM: Percentage of hospitals with maternity units implementing the model program

 

Sleep position and environment are modifiable factors for infants and can have a direct result in reducing infant mortality. A multitude of challenges must be overcome to change the collective knowledge and practice to achieve safe sleep practices for all infants at all sleeps. Current and accurate guidance on risk reduction methods is crucial to address changes in the science over time and cultural norms that have been practiced for generations.

 

A study showing increased adherence to safe sleep practices in the hospital setting when a bundled intervention was implemented at room orientation rather than hospital discharge prompted the BFH to support development of such a model program. The development and implementation of a hospital-based model safe sleep program is supported with a social marketing approach targeting Philadelphia.

 

The second grant period (July 1, 2021, to June 30, 2024) with the Trustees of the University of Pennsylvania for the infant safe sleep initiative continued during 2023. The grantee was fully engaged in recruitment and implementation in 2023 and efforts extended throughout the state. All components of the hospital-based model safe sleep program, including training modules, patient education materials, implementation forms and guides, and evaluation instruments, are available online at www.pasafesleep.org. After implementing the hospital-based model safe sleep program, the grantee has been able to strengthen the evidence base used to develop the program. The dedication to substantiating the model with ongoing data adds to the strength and validity of the model resulting in greater interest in the model from birthing hospitals throughout the state.

 

In 2023, the grantee continued to offer a monthly live Subject Matter Expert (SME) training. The consistent training schedule assists with the ongoing challenges associated with the nursing shortage and staff turnover. As the hospital-based model program marked the seventh year of implementation, the need for new SMEs at fully implemented hospitals continued to increase. In addition to eliminating the need for all staff at a hospital to attend a single onsite live session, it has enriched the learning environment with participants from multiple hospitals. The grantee continued to report positive outcomes as participants were able to engage in peer-to-peer learning from hospitals at different levels of implementation.

 

By the end of 2023, the hospital-based model safe sleep program was fully implemented in 33 of the 83 (40%) birthing hospitals[1] which exceeded the ESM goal of 38% of birthing hospitals with implementation. The grantee was able to exceed the ESM goal despite the closure of three birthing units in 2022. Over 58,000 infants or 47% of the births in 2023 had parents who received safe sleep education through the model program exceeding the 39% ESM goal.

 

The ESM goal for the number of hospitals with maternity units recruited to implement the model safe sleep program in the next year was three for 2023 as it was a half of a grant year. The grantee ended 2023 with two hospitals recruited to implement the model safe sleep program in the next year. While the grantee did not achieve the ESM goal, one hospital was recruited and began implementing the hospital-based model program during 2023. Due to improvements to create a more dynamic implementation process, the ESM for the number of recruited hospitals no longer provides the predictive data it did when it was established in 2016.

 

Birthing providers are required to provide safe sleep education as established by Act 73 of 2010 the SIDS and Infant Safe Sleep Act. Act 73 requires caregivers to receive safe sleep education prior to discharge from the hospital and sign the Pennsylvania Sudden Infant Death Syndrome Education and Prevention Program Acknowledgement Form (Acknowledgement Form). In 2023, the BFH translated the form into eight additional languages at the request of hospitals as coordinated by the safe sleep initiative grantee (grantee). The grantee solicited feedback from participating hospitals about needs for safe sleep education and translation of materials was high on the list. Hospitals requested the Acknowledgement Form and other safe sleep education materials from the grantee to be translated into Amharic, German, Guatemalan Spanish, Indonesian, Karen, Khmer, Turkish, and Urdu. These languages were identified as increasing in frequency in hospitals across the state. Having materials in the caregiver’s preferred language allows for providers to meet patient needs with hospitals reporting better engagement of caregivers in life-saving education. All translated materials are available free online.

 

Strategy: Use data, as determined by the 6-step Perinatal Periods of Risk (PPOR) process, to implement prevention initiatives or interventions in the selected communities

 

Objective: Increase the number of targeted prevention initiatives or interventions implemented utilizing PPOR data

 

ESM: Number of targeted prevention initiatives or interventions implemented utilizing PPOR data

 

The Perinatal Periods of Risk (PPOR) is a comprehensive approach to help communities use data to reduce infant mortality rates and disparities in those rates. Designed as a “data to action” tool for use in cities with high infant mortality rates, PPOR brings community stakeholders together to build consensus, support, and partnership around vital records data. PPOR provides an analytic framework and steps for investigating and addressing the specific local causes of high fetal and infant mortality rates and disparities. All six stages of the PPOR process (readiness, data analysis, planning, implementation, evaluation, and reinvestment) contribute to making data a powerful agent for systems change, but at the core of PPOR are its analytic methods.

 

While the national infant mortality rate has declined over time, the Black-white gap in infant mortality has continued to increase. Prematurity, low birth weight, and preterm-related causes are generally understood to be the largest contributors to this persistent disparity. However, communities are often not uniformly aware of their root causes of infant mortality or aligned in how to best respond. Because of this, actions to reduce these disparities can be less impactful. Through the PPOR process, local communities determine the period(s) of risk with the most disparity in deaths to focus efforts. PPOR fosters greater cooperation in improving maternal and child health (MCH) through more effective data use, strengthened data capacity, and greater shared understanding of complex infant mortality issues. MCH programs can use PPOR to integrate health assessments, initiate planning, identify gaps, target more in-depth inquiry, and suggest clear interventions for addressing fetal and infant mortality. In addition, PPOR increases the use of relevant data to inform decision-making and evaluate population and programmatic needs at the community level.

 

Using Title V funds, the Montgomery County Health Department (MCHD) completed the first two phases of the PPOR in 2020. Results indicated disparities among Black/African American birthing individuals and their infants compared to white birthing individuals and their infants, with the greatest disparity being the death rate for very low birthweight Black/African American infants. A strategic plan was created with a focus on increasing allied health workers as well as training and increasing the number of certified doulas and Perinatal Community Health Workers (PCHW) to serve people of color (POC) in the county. In 2023 and through the first quarter of 2024, a network of 114 doulas was established through a partnership with Maternity Care Coalition. In an attempt to increase the workforce and ensure that the community is equally and accurately represented, doula and PCHW trainings were, and continue to be, offered with priority given to POC.

 

MCHD continues to build on and implement their PPOR strategic plan through their Montgomery Early Childhood Consortium (MECC). The MECC convenes community partners to share resources, trainings, and educational sessions with a focus on maternal and infant health issues, working to lower disparities for and improve birth outcomes among Black/African American birthing individuals and their infants. Meeting a minimum of four times per year, the MECC also hosts community events focused on improving MCH outcomes through community partnerships and collaboration.

 

In 2021, the BFH awarded Title V-funded grants to the Maternal and Child Health Consortium of Chester County (MCHC), Allegheny County Health Department (ACHD), and the Philadelphia Department of Public Health (PDPH) to conduct PPOR studies and implement community action plans in their local communities.

 

By the end of 2022,all three communities completed the first two stages of the PPOR process, which are focused on analyzing linked vital records data, identifying the period(s) of risk that has the largest opportunity gaps, and using key informant interviews and/or community focus groups to identify which causes and factors contribute most to gaps and disparities. Ultimately, all three PPOR analyses determined the greatest proportion of preventable feto-infant deaths and the highest racial disparities occur during the Maternal Health/Prematurity period. This suggests that reducing the proportion of very low birthweight infants would help reduce overall infant mortality rates and disparities for these communities.

 

After completing the data analyses, each grantee began working with their PPOR community stakeholder groups to select and/or develop initiatives and interventions for inclusion in their community action plan. The purpose of these action plans is to address specific drivers of feto-infant mortality and improve local birth outcomes, particularly for Black/African American birthing people and their infants. These community action plans must each include at least three targeted, evidence-based or evidence-informed prevention initiatives or interventions for implementation rooted in an antiracist, life-course framework and the 12-point plan as described by Dr. Michael Lu et al. in their 2010 article, “Closing the Black-White gap in birth outcomes; a life-course approach”, which is to:

1. Provide interconception care to women with prior adverse pregnancy outcomes;
2. Increase access to preconception care to African American women;
3. Improve the quality of prenatal care;
4. Expand healthcare access over the life course;
5. Strengthen father involvement in African American families;
6. Enhance coordination and integration of family support services;
7. Create reproductive social capital in African American communities;
8. Invest in community building and urban renewal;
9. Close the education gap;
10. Reduce poverty among African American families;
11. Support working mothers and families; and
12. Undo racism.

 

All three communities received approval to move forward with implementing their PPOR community action plans by the end of 2023. To date, of the 22 strategies, initiatives, and interventions included on these grantees’ action plans, 19 have been implemented, meeting the ESM goal. These projects are primarily focused on reducing racial disparities in maternal and infant health outcomes and include peer support programs, provider health equity trainings, community engagement and education events, expansion of healthcare and family support services, and increasing access to community-based doulas in priority communities.

 

The PPOR process is, at its core, community-based, led and supported by stakeholders outside of the contracting agency. The scope of what each grantee is able to accomplish with regards to their community action plan is largely dependent on the collaborations and relationships they have with the organizations, networks, and groups supporting their local communities. Well-connected and well-funded agencies conducting PPOR studies are better positioned to implement a higher quantity and quality of initiatives that can ultimately impact birthing people in their communities more broadly.

 

Priority: Improve the percent of children and youth with special health care needs who receive care in a well-functioning system

 

SPM: Percent of newborns with on time report out for out of range screens

 

Strategy: Review and analyze data from iCMS to identify submitters with requested repeat filter papers obtained; provide non-compliant submitters with technical assistance and information on best practices to improve their follow-up process

 

Objective: Increase the number of requested repeat filter papers obtained each year to expedite diagnosis and treatment

 

ESM: Percent of newborns with a requested repeat filter paper obtained

 

The DNSG had identified the lack of obtaining requested repeat filter papers as a concern. In 2023, 98.2% (9,782 of 9,964) of the requested repeat filter papers were collected, exceeding the previous year’s numbers, and meeting the established goal of 94%. Repeat specimens may be required because the initial specimen was unacceptable for testing or inconclusive results were found. If a repeat filter paper is required, the contracted newborn screening laboratory, Revvity, contacts the submitter (hospital, birth center, or midwife) to facilitate the repeat specimen collection. In some instances, the primary care physician is notified by Revvity. The DNSG also provides case management when a repeat filter paper is requested. Case management includes letters, faxes, emails, and phone calls to physicians and families.

 

The DNSG Nursing Services Consultant (NSC) monitors a report which identifies requested repeats not obtained. In addition, the NSC reviews every case closed without a requested repeat to ensure appropriate case management by the community health nurse (CHN). The NSC also provides technical assistance to the submitter if made aware of non-responsiveness from the CHN. Awareness of the lack of compliance is the first step in engaging birth facilities to help more readily bring families back in for a repeat collection.

 

The NSC monitors two additional monthly reports. The first report itemizes the unacceptable filter papers received by submitter, with the reasons the specimen was rendered unacceptable, which leads to repeats being requested. The second report identifies filter papers that were missing essential information, and the specific information, at the time of submission by submitter, which leads to delays in reporting. The NSC provides hospitals with their individual reports monthly, while providing technical assistance. Providing individual reports to submitters leads to on-site review of trends and education/re-education of staff. Also, in 2021, after multiple inquiries about how to correctly complete a metabolic screen filter paper, the DSNG developed a document titled Filter Paper Completion Guidelines, detailing the various sections of the filter paper with information on how to correctly complete each section. This document is posted on the DNSG webpage under Provider Resources for easy access.

 

The BFH developed a state performance measure (SPM) that mirrors the national outcome measure of Newborn Screening Timely Follow-Up. The SPM, percent of newborns receiving an on-time report out for an abnormal result, is also linked to this ESM, because without a repeat filter paper, there is no on-time report out or physician follow-up. During 2021, the DNSG began monitoring and collecting programmatic data related to this indicator. Data review of 2023 initial report out timeframes for an abnormal result indicates 64% (18 of 28) time-critical conditions were called out on or before the infant’s fifth day of life, while the average report out time for all conditions (time critical and non-time critical) was within six days of life. The recommendation for reporting out of range results for all non-critical and normal screens is within seven days of life. The overall percent of newborns with an on time report out for out-of-range screens was 92.5 (361/390). There is an opportunity for improvement in reporting out time-critical conditions if Pa. is to meet HRSA’s recommendation.

 

Revvity modified an existing report to include the initial call out date. The NSC monitors this report on a quarterly basis to ensure initial call out dates are noted and compares data for random cases to the documentation in the web-based case management system (iCMS). If dates are missing or mismatched on both reports, the NSC alerts the laboratory. Documentation review of 2023 data demonstrates 100% documented report out dates for pre-positive results.

 

 Strategy: Utilize the match with the Vital Records Registry to identify newborns with a dried blood spot (DBS) screening

 

Objective: Annually increase the percent of newborns receiving a DBS screening

 

ESM: Percent of newborns born in Pennsylvania receiving a DBS screening

 

The ESM measures the percent of newborns born in Pa. receiving a DBS to ensure they receive an initial newborn screening. Without DBS screening, potentially devastating conditions present at birth may go undetected until the infant becomes symptomatic. The baby’s development may already be affected by the time symptoms appear, and some of the conditions screened can be life threatening if treatment is delayed.

 

The DNSG has a data share agreement with the Vital Records Registry to identify newborns with a birth certificate but without documentation of the DBS screening in iCMS. The CHN provides case management services, which includes contacting the families and birth facility to notify both parties of the missed DBS screening. In addition, technical assistance is provided by the NSC, which includes education to birth facilities to inform them of the importance of timely screening and screening verification. As a result, in 2023, 99.4% of all babies born in Pennsylvania underwent newborn DBS screening. The data share gives the DNSG access to review cases missing filter papers and identify the reason(s) for the infant not having been screened, such as missed, transferred, parent refusal, expired, and non-resident.

 

An online newborn screening education module, with a focus on timeliness, is available to all providers and partners on the TRAIN PA website. This module, previously funded by NewSTEPs, was originally completed by the University of Pittsburgh via an intergovernmental agreement with the DNSG in 2019 and revised in 2021. The module is also available on the DNSG webpage.

 

The DNSG continues to release a quarterly newborn screening newsletter. The newsletter provides submitters with program updates and DBS timeliness improvement methods. Additionally, individual calls with DBS coordinators, nursery managers, neonatal intensive care unit managers, and midwives to discuss barriers, educational needs, and program updates were held as needed to reinforce the need of complete and timely newborn screening.

 

Strategy: Work with the Child Death Review (CDR) program to determine possible opportunities to collaborate

 

Objective: Perform a data comparison and match newborns who were reported as a sudden unexplained infant death (SUID) to the child death review (CDR) program with newborns in the Pennsylvania Internet Case Management System (iCMS) to determine if any infant reported to have expired had abnormal Dried Blood Spot (DBS), Critical Congenital Heart Defect (CCHD), or Neonatal Abstinence Syndrome (NAS) results or may have missed timely screening that may have contributed to demise

 

ESM: Meet with the CDR program for collaboration between programs four times per year

 

The DNSG and Division of Bureau Operations (DBO) entered into a data sharing agreement to begin analyzing data submitted to the CDR program and CCHD, DBS, and NAS data submitted to the DNSG to see if any correlations existed that could lead to programmatic changes that may prevent future infant deaths.

 

The agreement between divisions involves a quarterly data match of SUID cases reported to the CDR program to infant cases in iCMS. The two divisions initially began analyzing 2019 SUID cases to see if any of the infants who died did not receive a timely CCHD screen by the birth hospital or in the home birth setting.

 

In 2020, the DNSG and DBO expanded the data comparison to include DBS and NAS data in addition to CCHD screening data for 2020 records. Since one of the matching cases in 2020 was confirmed as having NAS, the program plans to continue to analyze correlations between NAS diagnosed infants reported as SUID cases to determine if any policy changes or educational materials may serve to help eliminate SUID related demise in the NAS population.

 

In 2021, the match produced 115 records. The DNSG reviewed the 115 cases, and, as in previous years, all had a passing CCHD screening result or were appropriately excluded from screening due to prematurity and birth weight less than 1500 grams. 103 of the 115 cases also had a timely DBS collection, and the screening results again indicating the babies had within normal limit findings for all Pennsylvania mandated conditions. 12 of the babies had unacceptable dried blood spot initial specimens that were collected prior to 24 hours of life. Each of the 12 had a timely repeat dried blood spot specimen collected and the screening results on the repeat indicated the babies had within normal limit findings for all the Pennsylvania mandated conditions. 11 of the 115 matched cases met criteria to qualify as confirmed cases of NAS. The DNSG continues to collaborate with CDR program representatives to determine how to best educate mothers, primary care physicians, and those directly involved with plans of safe care.

 

To date, the 2019, 2020, and 2021 data matches did not identify any correlation between CDR cases and not performed CCHD and DBS newborn screenings. Although the match has not led to actionable programmatic changes through the review of the 2019, 2020, and 2021 data with CCHD and DBS matches, the NAS match identifies a potential correlation between babies diagnosed with NAS being at higher risk of SUID. The DNSG and CDR program plan to continue with the data match and use the data to influence stakeholders involved in developing safe plans of care and educational materials.

 

Priority: Strengthen Title V staff’s capacity for data-driven and evidence-based decision making and program development

 

SPM: Increase the number of programs or policies created or modified as a result of staff’s use of evidence-based, data driven decision making each calendar year

 

Strategy: Increase access to and use of Child Death Review data sources to enhance program planning, design and implementation

 

Objective: Annually increase the number of reviews by local CDR teams of prematurity deaths that include identification of the underlying causes of death

 

ESM: Increase percent of prematurity cases reviewed by local CDR teams that include identification of the underlying causes of death by 5% each year

 

Some local CDR teams were unable to meet consistently in 2023, impeding the ability to meet this ESM. Of the deaths occurring in 2021 (most recent year available), local CDR teams reviewed and entered 148 infant and child deaths where the cause of death was listed as prematurity. Due to lags in teams meeting, the review and data entry of 2021 prematurity deaths may not be complete.

 

ESM: Number of annual trainings to local CDR teams on guidelines of identifying the underlying causes of prematurity deaths

 

Scheduling a training for local CDR teams on identifying the underlying causes in prematurity deaths has been delayed due to the inability to secure access to a virtual training platform that is easily accessible for partners without Microsoft Teams. The delivery method for this training needs reevaluated. Training objectives and a presenter to facilitate have been identified and the training will be scheduled in fiscal year 2024. The participants will be able to:

• Identify risk factors in preterm births.
• Define how health inequities and disparities impact preterm births.
• Match prevention strategies to reduce preterm births.

 

Local CDR teams were provided with written materials on effective reviews from the National Center for Fatality Review and Prevention, including review tips and prevention ideas on infant deaths resulting from prematurity.

[1] This figure refers to birthing hospitals only and does not include freestanding birthing centers which are counted in the figure referenced on page 1.