359 - Neonatal Encephalopathy – A Novel International Multidisciplinary Real-Time Delphi Consensus Definition

Publication Number: 359.5752

Aoife Branagan, Trinity College Dublin, Dublin 8, Dublin, Ireland; Tim Hurley, Children's Health, Dublin, Dublin, Ireland; Fiona Quirke, School of Medicine, University of Limerick, Limerick, Limerick, Ireland; Declan Devane, University of Galway, Moycullen, Galway, Ireland; Petek Eylul Taneri, University of Galway, Galway, Galway, Ireland; Dearbhla Byrne, The Coombe Hospital, Dublin 8, Dublin, Ireland; Nadia Badawi, University of Sydney, Sydney, New South Wales, Australia; Cynthia Bearer, UH Rainbow Babies & Children's Hospital/Case Western Reserve University, Cleveland, OH, United States; Frank H. Bloomfield, University of Auckland, Auckland, Auckland, New Zealand; Sonia L. Bonifacio, Stanford University School of Medicine, Los Altos, CA, United States; Geraldine B. Boylan, University College Cork, Cork, Cork, Ireland; Suzann K. CAMPBELL, University of Illinois Chicago, CHICAGO, IL, United States; Lina Chalak, UTSW, Dallas, TX, United States; Mary D'Alton, Columbia University, New York, NY, United States; Linda S de Vries, UMCU, Utrecht, Utrecht, Netherlands; Mohamed El-Dib, Harvard Medical School - Brigham and Women's Hospital, Boston, MA, United States; Donna M Ferriero, University of California San Francisco, San Francisci, CA, United States; Chris Gale, Imperial College London, London, England, United Kingdom; Pierre Gressens, Inserm, Paris, Ile-de-France, France; Alistair J.. Gunn, The University of Auckland, Auckland, Auckland, New Zealand; Sarah Land, Peeps, Oldham, England, United Kingdom; Deirdre Murray, University College Cork, Cork, Cork, Ireland; Karin B. Nelson, NINDS, NIH, Washington, DC, United States; Betsy Pilon, Hope for HIE, West Bloomfield, MI, United States; Nicola J. Robertson, University College London, London, England, United Kingdom; Eleanor J J. Molloy, Trinity College, Paediatrics and Child Health, Dublin, Dublin, Ireland

Background: ‘Neonatal Encephalopathy’ (NE) describes conditions in the early neonatal period causing disturbed neurological function. One aetiology of NE is peripartum hypoxia ischaemia. The terms NE, hypoxic ischaemic encephalopathy (HIE) and perinatal asphyxia (PA) have been used interchangeably in the literature and communications between professionals and families.

Objective: The DEFiNE study aimed to create an international consensus-based definition of NE as a first step towards clarifying terminology and definitions in this area.

Design/Methods: An international steering group of 24 multidisciplinary experts in the area, including parents was formed. A systematic review of definitions used in clinical trials in this area defined the project's scope. The results of this review were used to design an online Real-Time Delphi survey, which was live for five months. Three international consensus meetings were held online to finalise inclusions and wording in the definition, which the steering committee then approved.

Results: The results of the systematic review highlighted the lack of consistency in terminology and definitions in newborn brain health. The Delphi survey was open for 5 months with 235 completed and 143 partially completed responses. Respondents came from 52 countries, with 20% of these from low- to middle- income countries. Most respondents were healthcare workers, with 8% representing parents/caregivers of infants with NE. Consensus development workshops were held online, and 62 individuals attended at least one of the three meetings. The final definition was structured with primary, secondary, and tertiary domains. The primary domain is as follows: Neonatal Encephalopathy (NE) is a heterogeneous clinical condition of abnormal/impaired brain function with multiple potential causes, presenting as an altered level of consciousness, seizures, abnormal primitive and deep tendon reflexes, altered muscle tone, posture and movements, or abnormal brain-related breathing pattern, and can be associated with significant morbidity and mortality.

Conclusion(s): This process developed a consensus definition for the term NE, with participation from a broad range of stakeholders internationally involved in caring for these infants. Adopting consensus-based terminology and definitions will improve communication between healthcare professionals and families, facilitate enhanced research, and improve care for these infants.