title: Measuring and communicating meaningful outcomes in neonatology: A family perspective.
abstract: Medium- and long-term outcomes have been collected and described among survivors of neonatal intensive care units for decades, for a number of purposes: (1) quality control within units, (2) comparisons of outcomes between NICUs, (3) clinical trials (whether an intervention improves outcomes), (4) end-of-life decision-making, (5) to better understand the effects of neonatal conditions and/or interventions on organs and/or long-term health, and finally (6) to better prepare parents for the future. However, the outcomes evaluated have been selected by investigators, based on feasibility, availability, cost, stability, and on what investigators consider to be important. Many of the routinely measured outcomes have major limitations: they may not correlate well with long-term difficulties, they may artificially divide continuous outcomes into dichotomous ones, and may have no clear relationship with quality of life and functioning of children and their families. Several investigations, such as routine term cerebral resonance imaging for preterm infants, have also not yet been shown to improve the outcome of children nor their families. In this article, the most common variables used in neonatology as well as some variables which are rarely measured but may be of equal importance for families are presented. The manner in which these outcomes are communicated to families will be examined, as well as recommendations to optimize communication with parents.
authors: Department of Pediatrics, Université de Montréal; Division of Neonatology and centre de recherche, CHU Sainte-Justine, Montréal, Canada; Bureau de l'Éthique Clinique, Université de Montréal, Canada; Unité d'éthique clinique, unité de soins palliatifs, unité de recherche en éthique clinique et partenariat famille, Hôpital Sainte-Justine, Montréal, Canada. Electronic address: anniejanvier@hotmail.com.
authors: Annie
authors: A
authors: Janvier
authors: Parent and patient representative, patients for Patient Safety Canada, Edmonton, Alberta, Canada; The deVeber Institute for Bioethics and Social Research, North York, Ontario Canada.
authors: Barbara
authors: B
authors: Farlow
authors: Parent representative, Human Health Therapeutics, National Research Council, Montréal, Canada.
authors: Jason
authors: J
authors: Baardsnes
authors: Parent representative, Villa Maria High School, Montreal, Quebec'.
authors: Rebecca
authors: R
authors: Pearce
authors: Department of Pediatrics, Université de Montréal; Division of Neonatology and centre de recherche, CHU Sainte-Justine, Montréal, Canada.
authors: Keith J
authors: KJ
authors: Barrington
mesh_terms: D019985:Benchmarking; D003142:Communication; D003657:Decision Making; D004644:Emotions; D019317:Evidence-Based Medicine; D006302:Health Services Research; D006801:Humans; D007231:Infant, Newborn; D007234:Infant, Premature; D007235:Infant, Premature, Diseases / Q000523:psychology / Q000628:therapy*; D019102:Infant, Very Low Birth Weight; D007363:Intensive Care Units, Neonatal / Q000592:standards; D009359:Neonatology; D017063:Outcome Assessment, Health Care; D010166:Palliative Care / Q000592:standards; D010290:Parents / Q000523:psychology*; D011368:Professional-Family Relations / Q000941:ethics; D011785:Quality Assurance, Health Care; D011788:Quality of Life
keywords: Communication; Congenital anomalies; Disability; Empathy; End-of-life decisions; Extreme prematurity; Family-centered care; Life-sustaining interventions; Neonatal intensive care unit; Palliative care; Screening