514 - Barriers and Facilitators to Neurodevelopmental Care Among At-Risk Newborns Across Washington State

Publication Number: 514.3640

Sara K. Neches, University of Washington School of Medicine, Shoreline, WA, United States; Megan E. Woods, University of Washington School of Medicine, Seattle, WA, United States; Krystle M.. Perez, University of Washington, Seattle, WA, United States; Kendell German, University of Washington School of Medicine, Seattle, WA, United States; Ulrike Mietzsch, University of Washington School of Medicine, Seattle, WA, United States; John Feltner, University of Washington School of Medicine, Seattle, WA, United States; Niranjana Natarajan, University of Washington School of Medicine, Seattle, WA, United States; Cindy Trevino, University of Washington School of Medicine, Seattle, WA, United States; Rebecca Penders, DOH/Providence, Spokane, WA, United States; Sharilyn R. Emhoff, MultiCare Yakima Memorial Hospital, Yakima, WA, United States; Bat-Sheva Stein, University of Washington School of Medicine, TUMWATER, WA, United States; Sandra E. Juul, University of Washington, Seattle, WA, United States; Brent Collett, University of Washington School of Medicine, Seattle, WA, United States; Gregory C.. Valentine, University of Washington School of Medicine, Tacoma, WA, United States

Background: Newborns requiring admission to level III or IV neonatal intensive care units (NICUs) are at high risk for life-long neurodevelopmental impairment. Neurodevelopmental follow-up (NDFU) centers provide multidisciplinary assessments and interventions that improve outcomes. However, up to 50-60% of high-risk newborns will be lost to follow-up due to a complex network of factors, including sociodemographic, maternal, and medical. To reduce disparities in NDFU access, we must evaluate these factors from multiple perspectives, including NICU discharge practices, NDFU centers, and families.

Objective: To identify barriers and facilitators to NDFU care among families of high-risk neonates and to explore existing collaboration between NDFU centers and referring NICUs in WA.

Design/Methods: Collaborating with the WA State Department of Health, cross-sectional surveys were distributed by email between September and November 2024 to providers at NDFU centers, Early Intervention (EI) programs and Neurodevelopmental (ND) clinics, and Level III and IV NICUs across Washington State to establish referral and scheduling practices, assess developmental screening tools, and explore methods of sharing neonatal outcomes with referring NICUs. Data was collected using a REDCap database and analyzed using descriptive statistics.

Results: Providers from 13 (68%) NDFU centers (ND, N=3 and EI, N=10) and 14 (88%) NICUs (Level III, N=12 and Level IV, N=5) responded. Provider demographics and NICU and NDFU center characteristics are presented in Table 1. 70% of NDFU clinics reported seeing < 20 referred NICU patients per month. The most common barrier to follow-up was inadequate appreciation from families of the necessity of the appointment (62%), followed by scheduling conflicts (38%) and transportation needs (31%). Facilitators include support from clinic teams (46%), availability of home-based services (38%), and flexible scheduling (23%; Fig 1). 69% of NDFU clinics utilized telehealth services. 60% of NDFU clinics do not routinely share outcome data with referring NICUs, and 0% of NICU providers reported receiving data from ND or EI clinics (Fig. 2).

Conclusion(s): Significant opportunities exist to overcome barriers to NDFU access among high-risk newborns in WA. A state-wide follow-up database and standardized education for WA NICUs may overcome communication barriers between referring NICUs and NDFU centers and improve family appreciation for the importance of NDFU. Future research will explore family perceptions and barriers to NDFU.

Provider and Neurodevelopmental Follow-Up Center Characteristics
Table 1_NDV.pdf1. NICU providers reported examples of birthweight criteria to include: ≤1500g at birth, Intrauterine Growth Restriction and Small for Gestational Age ( <10%’tile).
2. Most gestational age criteria included infants <32 weeks’ gestation at birth, though the upper gestational age cut-off ranged from 32-37 weeks’ gestation.
3. Only NDFU center providers indicating their clinic tracked no shows (N=9) were surveyed about percentages of no shows at first and 12-month visits.


Barriers and Facilitators to Neurodevelopmental Follow-up in Washington State
Data from N=13 Neurodevelopmental Follow-up centers (N=10 Early Intervention programs and N=3 Neurodevelopmental clinics).

Methods Used by Neurodevelopmental Follow-up Centers for Sharing Results with Referring NICUs
Data from N=27 total survey responses (N=14 NICUs, N=10 Early Intervention programs, N=3 Neurodevelopmental clinics). Data will not equal 100% as respondents could select all that apply.

Provider and Neurodevelopmental Follow-Up Center Characteristics
Table 1_NDV.pdf1. NICU providers reported examples of birthweight criteria to include: ≤1500g at birth, Intrauterine Growth Restriction and Small for Gestational Age ( <10%’tile).
2. Most gestational age criteria included infants <32 weeks’ gestation at birth, though the upper gestational age cut-off ranged from 32-37 weeks’ gestation.
3. Only NDFU center providers indicating their clinic tracked no shows (N=9) were surveyed about percentages of no shows at first and 12-month visits.


Barriers and Facilitators to Neurodevelopmental Follow-up in Washington State
Data from N=13 Neurodevelopmental Follow-up centers (N=10 Early Intervention programs and N=3 Neurodevelopmental clinics).

Methods Used by Neurodevelopmental Follow-up Centers for Sharing Results with Referring NICUs
Data from N=27 total survey responses (N=14 NICUs, N=10 Early Intervention programs, N=3 Neurodevelopmental clinics). Data will not equal 100% as respondents could select all that apply.