A Brief History of the Neonatal Evaluation and Outcomes Network

Health care professionals, families, and members of organization who share an interest in neurodevelopmental outcomes of NICU survivors have been challenged by the lack of understanding about follow-up practices and programs at statewide levels. Texas is a large state multiple academic and private developmental follow-up programs.

On February 20, 2015, a one-day summit was convened to gain a better understanding about follow-up practices among centers offering care for children and families affected by preterm birth in Texas and Oklahoma. The summit was organized under the leadership of Dr. Alice Gong, Professor of Pediatrics, William & Rita Head Distinguished Chair in Developmental and Environmental Neonatology, Division of Neonatology, Department of Pediatrics, School of Medicine, UT Health San Antonio. It was held at the Omni Hotel in San Antonio in conjunction with a gala honoring Dr. Rajam Ramamurthy, Professor Emerita, Division of Neonatology, Department of Pediatrics, School of Medicine, UT Health San Antonio and her many contributions to the field of neonatology. Dr. Tonse Raju, Branch Chief, Pregnancy and Perinatology Branch, Eunice Kennedy Shriver National Institute of Child Health and Development, was the keynote speak and a guest of honor at this first summit.

The purpose of Summit I was to initiate dialogue about follow-up best practices and explore the feasibility of creating a working group focused on preterm follow-up and outcomes. An email invitation was sent to nine Texas follow-up programs. Of these, four academic and three non-academic programs participated. Representatives Texas Department of Assistive and Rehabilitative Services’ Early Childhood Intervention (ECI) program and Hand to Hold, a family advocacy group for NICU survivors, also participated in the meeting. The outcomes of the meeting included a set of recommendations for quality, comprehensive neurodevelopmental follow-up care and a published manuscript, Newborn intensive care survivors: A review and plan for collaboration in Texas, which acknowledges by name all of those who participated in the meeting. In addition, Summit I launched the formation of the Neonatal Evaluation and Outcomes Network (NEON) collaborative. Leaders of the collaborative agreed to convene an annual summit, rotating to different follow-up program hosts, as one way to continue the group momentum.

On February 19, 2016, Summit II was convened at the Hilton Garden Inn-Medical Center in Fort Worth under the leadership of Dr. Yvette Johnson, Medical Director, Cook Children’s N.E.S.T. Developmental Follow-up Center. The keynote speaker was Dr. Betty Vohr, Professor of Pediatrics, Albert Medical School of Brown University, presenting “Improving Outcomes of Very Preterm Infants: Have We Overlooked the Obvious?” Dr. Allison Dempsey, UT Houston Memorial Hermann Children’s Hospital discussed the Bayley Scales for developmental assessment, and Dr. Barbara Deloian, President and CEO, Special Kids/Special Care, Inc. provided an overview for developing their 501(c)3 non-profit collaborative in Colorado. Members attending the summit convened in small groups to identify performance measures, data points, interventions, short-term and intermediate/long-term outcomes, and potential needs and challenges for achieving outcomes on topics of advocacy/policy, parental voices/family-centered care, post-discharge nutrition, standardization of developmental assessment, and clinic coordination. Small groups reconvened in a large group to present their work. The efforts of the small groups were outlined a Summit II executive summary which also includes a roster of meeting participants. Small groups were tasked to continue working toward their performance measures during the year and come prepared to report at Summit III.

Summit III was hosted at UT Health McGovern Medical School at Houston under the leadership of Dr. Andrea Duncan, Associate Professor, Medical Director, Neonatal High-Risk Clinic, Tiny Tot Clinic for Neurodevelopmental and Behavioral Health.™ Speakers included Glen Aylward, PhD, who presented, “Developmental Follow-up: Outcomes, Controversies, and Suggestions”; Susan Hintz, MD, MSepi, who presented, “Development of the California Quality Collaborative for follow-up of at-risk children”; and Martha Welch, MD, who presented, “Family Nurture NICU Intervention;” and Alice Gong, MD, who presented “Attachment Assessment in the NICU.” NEON subcommittee provided progress reports followed by a demonstration of the new NEON web site. The meeting culminated in discussion of plans for a survey of NEON member groups to develop baseline information on developmental practices. Summit III PowerPoints are available by linking on presenters’ names listed on the agenda on the Summit III tab of the NEON web site.

Summit IV was hosted by McLane Children’s Hospital/Baylor Scott Y White/Temple, Texas, under the leadership of Dr. M. Reddy Beerman, Physician-in-Chief, McLane Children’s Hospital and Chair and Professor of Pediatrics, Baylor Scott & White/Temple, Dr. Niraj Vora, and Dr. Martha Hemingway, also with McLane Children’s Hospital. NEON member groups provided brief follow-up reports on their cerebral palsy practices. Dr. Audelio Rivera, Pediatrix-Austin First Steps, reported on the 2017 NEON Group Survey, presenting data from 16 NEON follow-up programs. Dr. Nathalie Maitre, Director, NICU Follow-up Clinic, Nationwide Children’s Hospital, Associate Professor, Ohio State University, Columbus, Ohio, presented “The Neo's Guide to Early Detection and Intervention for CP: Why, When and How”; Dr. Ann R. Stark, Medical Director, AAP NICU Verification Program, Professor of Pediatrics, Division of Neonatology, Vanderbilt University School of Medicine, presented, “Neonatal Follow-up, Texas Levels of NICU Care Designation, and the AAP NICU Verification Program”; and NEON members determined the collaborative QI project for 2018 would be to collect baseline data from 2017 and work to increase the percentage of patients in 2018 who have an initial follow-up visit at three to four months corrected gestational age in order to facilitate early diagnosis and intervention for patients with cerebral palsy. Summit IV PowerPoints, Meeting Executive Summary, Meeting Proceedings, Meeting Participant Roster, and NEON Group Survey of Cerebral Palsy Practices, are available at the NEON web site under Summit IV tab.

Summit V will convene on Friday, February 8, 2019, in San Antonio under the leadership of co-hosts, Dr. Alice Gong, UT Health San Antonio and Dr. Christine Aune, Pediatrix-San Antonio Developmental Pediatric Clinic.