HOPE and DREAM: A Two-Clinic NICU Follow-up Model

Abstract

Objective The natural extension of inpatient-focused neonatal neurocritical care (NNCC) programs is the evaluation of long-term neurodevelopmental outcomes in the same patient population.

Clinical Design A dedicated and collaborative team of neonatologists, neonatal neurologists, neuropsychologists, neurosurgeons, physical medicine and rehabilitation physicians, and psychologists are necessary to provide personalized medicine, developmental assessments, and parental education for NNCC graduates. To achieve this goal, we devised a two-clinic follow-up model at Children's Wisconsin: HOPE (Healthy Outcomes Post-ICU Engagement) and DREAM: Developmentally Ready: Engagement for Achievement of Milestones) clinics. Those infants with significant neurologic diagnoses attend DREAM clinic, while all other high-risk neonatal intensive care unit (NICU) infants are seen in the HOPE clinic.

Conclusion These clinic models allow for a targeted approach to post-NICU care, which has improved family engagement and perceptions of value.

Key Points

• Infants with neurologic compromise are a specialized population with increasing survival.

• Interdisciplinary NICU follow-up brings together previously separated outpatient service lines.

• Our novel clinic model allows for specialized developmental assessments.

Keywords

neonatal neurocritical care - high risk - long-term follow-up - multidisciplinary care model - value - care

• References

• 1 Manuck TA, Rice MM, Bailit JL. et al; Eunice Kennedy Shriver National Institute of Child Health and Human Development Maternal-Fetal Medicine Units Network. Preterm neonatal morbidity and mortality by gestational age: a contemporary cohort. Am J Obstet Gynecol 2016; 215 (01) 103.e1-103.e14
• 2 Adams-Chapman I, Heyne RJ, DeMauro SB. et al; Follow-Up Study of the Eunice Kennedy Shriver National Institute of Child Health and Human Development Neonatal Research Network. Neurodevelopmental impairment among extremely preterm infants in the Neonatal Research Network. Pediatrics 2018; 141 (05) e20173091
• 3 Luu TM, Rehman Mian MO, Nuyt AM. Long-term impact of preterm birth: neurodevelopmental and physical health outcomes. Clin Perinatol 2017; 44 (02) 305-314
• 4 McGowan EC, Vohr BR. Neurodevelopmental follow-up of preterm infants: what is new?. Pediatr Clin North Am 2019; 66 (02) 509-523
• 5 Vohr BR, Wright LL, Dusick AM. et al. Neurodevelopmental and functional outcomes of extremely low birth weight infants in the National Institute of Child Health and Human Development Neonatal Research Network, 1993-1994. Pediatrics 2000; 105 (06) 1216-1226
• 6 American Academy of Pediatrics. Follow-up care of high-risk infants. Pediatrics 2004; 114 (supplement_5): 1377-1397
• 7 American Academy of Pediatrics Committee on Fetus and Newborn. Hospital discharge of the high-risk neonate. Pediatrics 2008; 122 (05) 1119-1126
• 8 Andrews B, Myers P, Osterhout P, Pellerite M, Zimmerman A, Msall M. NICU follow-up care: the developmental and advocacy perspectives. Neoreviews 2014; 15 (08) e336-e343
• 9 Vohr BR. NICU discharge preparation and transition planning: editorial. J Perinatol 2022; 42 (suppl 1): 1-2
• 10 Smith VC, Love K, Goyer E. NICU discharge preparation and transition planning: guidelines and recommendations. J Perinatol 2022; 42 (suppl 1): 7-21
• 11 Glass HC, Bonifacio SL, Shimotake T, Ferriero DM. Neurocritical care for neonates. Curr Treat Options Neurol 2011; 13 (06) 574-589
• 12 Bonifacio SL, Van Meurs K. Neonatal neurocritical care: providing brain-focused care for all at risk neonates. Semin Pediatr Neurol 2019; 32: 100774
• 13 Austin T. The development of neonatal neurointensive care. Pediatr Res 2019 (e-pub ahead of print).
• 14 Glass HC, Ferriero DM, Rowitch DH, Shimotake TK. The neurointensive nursery: concept, development, and insights gained. Curr Opin Pediatr 2019; 31 (02) 202-209
• 15 Glass HC, Rowitch DH. The role of the neurointensive care nursery for neonatal encephalopathy. Clin Perinatol 2016; 43 (03) 547-557
• 16 Mulkey SB, Swearingen CJ. Advancing neurologic care in the neonatal intensive care unit with a neonatal neurologist. J Child Neurol 2014; 29 (01) 31-35
• 17 Bashir RA, Espinoza L, Vayalthrikkovil S. et al. Implementation of a neurocritical care program: improved seizure detection and decreased antiseizure medication at discharge in neonates with hypoxic-ischemic encephalopathy. Pediatr Neurol 2016; 64: 38-43
• 18 Scher MS. “The first thousand days” define a fetal/neonatal neurology program. Front Pediatr 2021; 9: 683138
• 19 Doyle LW, Anderson PJ, Battin M. et al. Long term follow up of high risk children: who, why and how?. BMC Pediatr 2014; 14: 279
• 20 Kuppala VS, Tabangin M, Haberman B, Steichen J, Yolton K. Current state of high-risk infant follow-up care in the United States: results of a national survey of academic follow-up programs. J Perinatol 2012; 32 (04) 293-298
• 21 Swearingen C, Simpson P, Cabacungan E, Cohen S. Social disparities negatively impact neonatal follow-up clinic attendance of premature infants discharged from the neonatal intensive care unit. J Perinatol 2020; 40 (05) 790-797
• 22 Brachio SS, Farkouh-Karoleski C, Abreu A, Zygmunt A, Purugganan O, Garey D. Improving neonatal follow-up: a quality improvement study analyzing in-hospital interventions and long-term show rates. Pediatr Qual Saf 2020; 5 (06) e363