Newborn intensive care survivors: a review and a plan for collaboration in Texas

Gong et al. Maternal Health, Neonatology, and Perinatology (2015) 1:24 DOI 10.1186/s40748-015-0025-2 REVIEW Open Access Newborn intensive care survivors: a review and a plan for collaboration in Texas Alice Gong1*, Yvette R. Johnson2, Judith Livingston1, Kathleen Matula1 and Andrea F. Duncan3 Abstract Background: Neonatal intensive care is a remarkable success story with dramatic improvements in survival rates for preterm newborns. Significant efforts and resources are invested to improve mortality and morbidity but much remains to be learned about the short and long-term effects of neonatal intensive care unit (NICU) interventions. Published guidelines recommend that infants discharged from the NICU be in an organized follow-up program that tracks medical and neurodevelopmental outcomes. Yet, there are no standardized guidelines for provision of follow-up services for high-risk infants. The National Institute of Child Health and Human Development Neonatal Research Network and the Vermont Oxford Network have made strides toward standardizing practices and conducting outcomes research, but only include a subset of developmental follow-up programs with a focus on extremely preterm infants. Several studies have been conducted to gain a better understanding of current practices in developmental follow-up. Some of the major themes in these studies are the lack of personnel and funding to provide comprehensive follow-up care; feeding difficulties as a primary issue for NICU survivors, families, and programs; wide variability in referral and follow-up care practices; and calls for standardized, systematic developmental surveillance to improve outcomes. Findings: We convened a one-day summit to discuss developmental follow-up practices in Texas involving four academic and three nonacademic centers. All seven centers described variable age and weight criteria for follow-up of NICU patients and a unique set of developmental practices, including duration of follow-up, types and timing of developmental assessments administered, education and communication with families and other health care providers, and referrals for services. Needs identified by the centers focused on two main themes: resources and comprehensive care. Participants identified key challenges for developmental follow-up, generated recommendations to address these challenges, and outlined components of a quality program. Conclusions: The long-term goal is to ensure that all children maximize their potential; a goal supported through quality, comprehensive developmental follow-up care and outcomes research to continuously improve evidence-based practices. We aim to contribute to this goal through a statewide working group collaborating on research to standardize practices and inform policies that truly benefit children and their families. Keywords: Preterm birth, Developmental follow-up, Standardized practice, Collaboration, Outcomes research Introduction Neonatal intensive care is a remarkable success story. Survival rates of infants weighing <800 grams increased from 0 % in 1943–1945 to 34 % in 1987–1988 and 70 % in 1994 [1]. In the early 1980s, preterm newborns <28 weeks gestation had a 90 % mortality rate. Recently the Eunice Kennedy Shriver National Institute of Child Health and * Correspondence: 1 Department of Pediatrics, The University of Texas Health Science Center at San Antonio, 7703 Floyd Curl Dr. San Antonio, Texas 78229, USA Full list of author information is available at the end of the article Development (NICHD) Neonatal Research Network (NRN) reported survival of 65 % and 56 % survival without severe impairment in infants <27 weeks gestation [2]. Extraordinary advances in obstetric and neonatal care have resulted in tremendous gains for the premature infant. The efforts and resources invested to achieve such gains come at a significant cost. The financial cost alone of neonatal intensive care has been estimated at $3,400 per hospital day [3]. Preterm births cost the U.S. health care system more than $26.2 billion in 2005 [4]. © 2015 Gong et al. Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Gong et al. Maternal Health, Neonatology, and Perinatology (2015) 1:24 Page 2 of 9 The substantial investment in neonatal care has resulted in improved mortality and morbidity outcomes of preterm infants. However, the significant decrease in mortality and short-term morbidities has not had a proportionate effect on long-term neurodevelopmental outcomes. Rigorous long-term outcome studies evaluating the impact of neonatal care and perinatal interventions have informed our understanding of their impact on long-term outcomes and helped to refine the care that has resulted in improved outcomes. Research on perinatal interventions, such as studies supported by NICHD, demonstrate the impact of obstetric and neonatal care on long-term outcomes of neonatal intensive care unit (NICU) survivors. Several key examples include findings that show: (1) Apgar scores do not predict cerebral palsy [5]; (2) the clear benefits of antenatal corticosteroids in reducing the risk of life-threatening morbidities including respiratory distress syndrome and intraventricular hemorrhage (IVH), balanced against studies demonstrating lack of benefit and possible harm from repeated courses [6]; (3) lack of benefit of antenatal treatment with magnesium sulfate on school-age outcomes [7]; (4) improved childhood outcomes following hypothermia for neonatal encephalopathy [8] and (5) benefit of early caffeine administration among preterm infants <1250 grams at birth and reduction of bronchopulmonary dysplasia (BPD) and improved long-term developmental outcomes [9]. The value of follow-up is also emphasized by studies isolating factors that impact long-term outcomes. For example, certain morbidities (e.g. IVH, necrotizing enterocolitis [NEC], BPD, retinopathy of prematurity [ROP]) have been identified that adversely affect outcomes whereas certain psychosocial factors (e.g. higher maternal and paternal IQ and socioeconomic status) positively impact child developmental outcomes and loss to follow-up [10–14]. Guillén, et al. [15] conducted a systematic review to assess center variation in rates of neurodevelopmental impairment (NDI) at 18–24 months corrected age among extremely low-birth-weight (ELBW) or extremely low-gestational-age (ELGA) infants. NDI was defined as the presence of at least one of the follow (...truncated)