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Neonatal palliative care

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https://www.readbyqxmd.com/read/29779802/feasibility-of-initiating-early-enteral-nutrition-after-congenital-heart-surgery-in-neonates-and-infants
#1
Rajat Kalra, Rohit Vohra, Malti Negi, Reena Joshi, Neeraj Aggarwal, Mridul Aggarwal, Raja Joshi
OBJECTIVE: To assess the feasibility of initiating enteral nutrition support with first 24 h of congenital heart repairs in neonates and Infants and its impact on outcomes following surgery. DESIGN: It is a prospective randomized control single blind study. SETTING: It is a single centre prospective study carried out in a tertiary care centre at Pediatric cardiac intensive care unit. PATIENTS: All patients with the cyanotic congenital heart disease with increase pulmonary blood flow, weighing less than 5 kg and undergoing congenital heart repair during the study period were included in the study...
June 2018: Clinical Nutrition ESPEN
https://www.readbyqxmd.com/read/29775603/genetic-and-extracardiac-anomalies-are-associated-with-inferior-single-ventricle-palliation-outcomes
#2
Bahaaldin Alsoufi, Courtney McCracken, Matthew Oster, Subhadra Shashidharan, Kirk Kanter
BACKGROUND: We aim to examine the effect of genetic syndromes and extracardiac anomalies (GS/EC) on single ventricle (SV) palliation with focus on hospital death, interstage mortality, and progression towards subsequent palliation stages. METHODS: 530 neonates with SV underwent first-stage palliation: Norwood (n=284,53%), shunt (n=173,33%), band (n=73,14%). Outcomes were compared between those with GS/EC (n=121,23%) and without GS/EC (n=409,77%). Regression analyses were adjusted for other risk factors (age, gender, prematurity, weight, SV anomaly, first-stage palliation surgery)...
May 15, 2018: Annals of Thoracic Surgery
https://www.readbyqxmd.com/read/29740195/prenatal-counseling-and-parental-decision-making-following-a-fetal-diagnosis-of-trisomy-13-or-18
#3
Phoebe Winn, Krishna Acharya, Erika Peterson, Steven Leuthner
OBJECTIVES: To evaluate parental decisions following a prenatal diagnosis of trisomy 13 (T13) or trisomy 18 (T18), prenatal counseling received, and pregnancy outcomes. STUDY DESIGN: Single-center, retrospective cohort study of families with a prenatal diagnosis of T13 or T18 from 2000 to 2016. RESULTS: Out of 152 pregnancies, 55% were terminated. Twenty percent chose induction with palliative care, 20% chose expectant management, 2% chose full interventions, and 3% were lost to follow-up...
May 8, 2018: Journal of Perinatology: Official Journal of the California Perinatal Association
https://www.readbyqxmd.com/read/29549119/the-case-for-early-use-of-rapid-whole-genome-sequencing-in-management-of-critically-ill-infants-late-diagnosis-of-coffin-siris-syndrome-in-an-infant-with-left-congenital-diaphragmatic-hernia-congenital-heart-disease-and-recurrent-infections
#4
Nathaly M Sweeney, Shareef A Nahas, Shimul Chowdhury, Miguel Del Campo, Marilyn C Jones, David P Dimmock, Stephen F Kingsmore, Rcigm Investigators
Congenital diaphragmatic hernia (CDH) results from incomplete formation of the diaphragm leading to herniation of abdominal organs into the thoracic cavity. CDH is associated with pulmonary hypoplasia, congenital heart disease and pulmonary hypertension. Genetically, it is associated with aneuploidies, chromosomal copy number variants, and single gene mutations. CDH is the most expensive non-cardiac congenital defect: Management frequently requires implementation of Extracorporeal Membrane Oxygenation (ECMO), which increases management expenditures 2...
March 16, 2018: Cold Spring Harbor Molecular Case Studies
https://www.readbyqxmd.com/read/29520463/22q11-2-deletion-status-and-perioperative-outcomes-for-tetralogy-of-fallot-with-pulmonary-atresia-and-multiple-aortopulmonary-collateral-vessels
#5
Laura Mercer-Rosa, Okan U Elci, Nelangi M Pinto, Ronn E Tanel, Elizabeth Goldmuntz
Deletion of 22q11.2 (del22q11) is associated with adverse outcomes in patients with tetralogy of Fallot (TOF). We sought to investigate its contribution to perioperative outcome in patients with a severe form of TOF characterized by pulmonary atresia (PA) or severe pulmonary stenosis (PS) and major aortopulmonary collateral arteries (MAPCAS). We conducted a retrospective review of patients with TOF/MAPCAS who underwent staged surgical reconstruction between 1995 and 2006. Groups were compared according to 22q11...
June 2018: Pediatric Cardiology
https://www.readbyqxmd.com/read/29468729/literature-overview-highlights-lack-of-paediatric-donation-protocols-but-identifies-common-themes-that-could-guide-their-development
#6
REVIEW
A Vileito, M J Siebelink, Aae Verhagen
AIM: Paediatric donation is a unique and extremely sensitive process that requires specific knowledge and competencies. Most countries use protocols for organ and tissue donation to ensure optimal care for the donor and family, but these mainly focus on adults. However, the donation process for children differs from adults in many ways. An overview of the literature was performed to identify protocols for the paediatric population. METHODS: PubMed, Web of Science, EMBASE and the Internet were searched up to March 2016 for papers or other sources in English related to specific organ and tissue donation protocols for children and neonates...
May 2018: Acta Paediatrica
https://www.readbyqxmd.com/read/29452600/patterns-of-paediatric-end-of-life-care-a-chart-review-across-different-care-settings-in-switzerland
#7
Karin Zimmermann, Eva Cignacco, Sandra Engberg, Anne-Sylvie Ramelet, Nicolas von der Weid, Katri Eskola, Eva Bergstraesser, Marc Ansari, Christoph Aebi, Reta Baer, Maja Beck Popovic, Vera Bernet, Pierluigi Brazzola, Hans Ulrich Bucher, Regula Buder, Sandra Cagnazzo, Barbara Dinten, Anouk Dorsaz, Franz Elmer, Raquel Enriquez, Patricia Fahrni-Nater, Gabi Finkbeiner, Bernhard Frey, Urs Frey, Jeannette Greiner, Ralph-Ingo Hassink, Simone Keller, Oliver Kretschmar, Judith Kroell, Bernard Laubscher, Kurt Leibundgut, Reta Malaer, Andreas Meyer, Christoph Stuessi, Mathias Nelle, Thomas Neuhaus, Felix Niggli, Geneviève Perrenoud, Jean-Pierre Pfammatter, Barbara Plecko, Debora Rupf, Felix Sennhauser, Caroline Stade, Maja Steinlin, Lilian Stoffel, Karin Thomas, Christian Vonarburg, Rodo von Vigier, Bendicht Wagner, Judith Wieland, Birgit Wernz
BACKGROUND: Paediatric end-of-life care is challenging and requires a high level of professional expertise. It is important that healthcare teams have a thorough understanding of paediatric subspecialties and related knowledge of disease-specific aspects of paediatric end-of-life care. The aim of this study was to comprehensively describe, explore and compare current practices in paediatric end-of-life care in four distinct diagnostic groups across healthcare settings including all relevant levels of healthcare providers in Switzerland...
February 16, 2018: BMC Pediatrics
https://www.readbyqxmd.com/read/29414846/pediatric-palliative-care-in-infants-and-neonates
#8
REVIEW
Brian S Carter
The application of palliative and hospice care to newborns in the neonatal intensive care unit (NICU) has been evident for over 30 years. This article addresses the history, current considerations, and anticipated future needs for palliative and hospice care in the NICU, and is based on recent literature review. Neonatologists have long managed the entirety of many newborns' short lives, given the relatively high mortality rates associated with prematurity and birth defects, but their ability or willingness to comprehensively address of the continuum of interdisciplinary palliative, end of life, and bereavement care has varied widely...
February 7, 2018: Children
https://www.readbyqxmd.com/read/29406374/cerebral-oxygen-metabolism-before-and-after-rbc-transfusion-in-infants-following-major-surgical-procedures
#9
Felix Neunhoeffer, Michael Hofbeck, Martin Ulrich Schuhmann, Jörg Fuchs, Christian Schlensak, Martin Esslinger, Ines Gerbig, Vanya Icheva, Ellen Heimberg, Matthias Kumpf, Jörg Michel
OBJECTIVE: Although infants following major surgery frequently require RBC transfusions, there is still controversy concerning the best definition for requirement of transfusion in the individual patient. The aim of this study was to determine the impact of RBC transfusion on cerebral oxygen metabolism in noncardiac and cardiac postsurgical infants. DESIGN: Prospective observational cohort study. SETTING: Pediatric critical care unit of a tertiary referral center...
April 2018: Pediatric Critical Care Medicine
https://www.readbyqxmd.com/read/29375078/nurturing-futility-in-the-nicu-the-dutch-perspective
#10
A A Eduard Verhagen
Requests for life-prolonging treatments can cause irresolvable conflicts between health-care providers and surrogates. The Multiorganization Policy Statement (Bosslet et al. 2015) with recommendations to prevent and manage these conflicts creates a good opportunity to examine how end-of-life decisions are made in Dutch neonatal intensive care units and how medical futility is defined. The Dutch equivalent of medical futility in the context of NICU care has grown and developed rather independently, within the typical legal, ethical, and cultural framework of Dutch society...
2018: Perspectives in Biology and Medicine
https://www.readbyqxmd.com/read/29331209/ethical-and-end-of-life-considerations-for-neonates-requiring-ecmo-support
#11
REVIEW
Roxanne Kirsch, David Munson
ECMO has proven to be a life-saving intervention for a variety of disease entities with a high rate of survival in the neonatal population. However, ECMO requires clinical teams to engage in many ethical considerations. Even with ongoing improvements in technology and expertise, some patients will not survive a course of ECMO. An unsuccessful course of ECMO can be difficult to accept and cause a great deal of angst. These questions can result in real conflict both within the care team, and between the care team and the family...
March 2018: Seminars in Perinatology
https://www.readbyqxmd.com/read/29316996/a-randomised-trial-of-early-palliative-care-for-maternal-stress-in-infants-prenatally-diagnosed-with-single-ventricle-heart-disease
#12
Hayley S Hancock, Ken Pituch, Karen Uzark, Priya Bhat, Carly Fifer, Maria Silveira, Sunkyung Yu, Suzanne Welch, Janet Donohue, Ray Lowery, Ranjit Aiyagari
Children with single-ventricle disease experience high mortality and complex care. In other life-limiting childhood illnesses, paediatric palliative care may mitigate maternal stress. We hypothesised that early palliative care in the single-ventricle population may have the same benefit for mothers. In this pilot randomised trial of early palliative care, mothers of infants with prenatal single-ventricle diagnoses completed surveys measuring depression, anxiety, coping, and quality of life at a prenatal visit and neonatal discharge...
April 2018: Cardiology in the Young
https://www.readbyqxmd.com/read/29273020/trends-in-cause-and-place-of-death-for-children-in-portugal-a-european-country-with-no-paediatric-palliative-care-during-1987-2011-a-population-based-study
#13
Ana Forjaz de Lacerda, Barbara Gomes
BACKGROUND: Children and adolescents dying from complex chronic conditions require paediatric palliative care. One aim of palliative care is to enable a home death if desired and well supported. However, there is little data to inform care, particularly from countries without paediatric palliative care, which constitute the majority worldwide. METHODS: This is an epidemiological study analysing death certificate data of decedents aged between 0 and 17 years in Portugal, a developed Western European country without recognised provision of paediatric palliative care, from 1987 to 2011...
December 22, 2017: BMC Pediatrics
https://www.readbyqxmd.com/read/29215810/pediatric-deaths-attributed-to-complex-chronic-conditions-over-10-years-in-korea-evidence-for-the-need-to-provide-pediatric-palliative-care
#14
Min Sun Kim, Nam Gu Lim, Hyun Joo Kim, Chohee Kim, Jin Yong Lee
BACKGROUND: Pediatric palliative care (PPC) is the active total care of children suffering from life-threatening illnesses. Palliative care includes symptom management, psychosocial support, and end-of-life care. Despite significant advances in disease diagnosis and treatment, resources for PPC of children with serious illnesses are limited in Korea. This study aimed to investigate the scale, time trends, disease composition, regional distribution, and unmet needs of children dying from complex chronic conditions (CCCs)...
January 1, 2018: Journal of Korean Medical Science
https://www.readbyqxmd.com/read/29179572/when-and-why-do-neonatal-and-pediatric-critical-care-physicians-consult-palliative-care
#15
Claire A Richards, Helene Starks, M Rebecca O'Connor, Erica Bourget, Taryn Lindhorst, Ross Hays, Ardith Z Doorenbos
BACKGROUND: Parents of children admitted to neonatal and pediatric intensive care units (ICUs) are at increased risk of experiencing acute and post-traumatic stress disorder. The integration of palliative care may improve child and family outcomes, yet there remains a lack of information about indicators for specialty-level palliative care involvement in this setting. OBJECTIVE: To describe neonatal and pediatric critical care physician perspectives on indicators for when and why to involve palliative care consultants...
January 1, 2017: American Journal of Hospice & Palliative Care
https://www.readbyqxmd.com/read/29129740/survey-on-neonatal-end-of-life-comfort-care-guidelines-across-america
#16
Shelly Haug, Sara Farooqi, Christopher G Wilson, Andrew Hopper, Grace Oei, Brian Carter
CONTEXT: Infants of age less than one year have the highest mortality rate in pediatrics. The American Academy of Pediatrics published guidelines for palliative care in 2013; however, significant variation persists among local protocols addressing neonatal comfort care at the end-of-life (EOL). OBJECTIVES: The purpose of this study was to evaluate current neonatal EOL comfort care practices and clinician satisfaction across America. METHODS: After institutional review board approval (516005), an anonymous, electronic survey was sent to members of the American Academy of Pediatrics Section on Neonatal-Perinatal Medicine...
March 2018: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/29128922/causes-of-renal-oligohydramnios-impact-on-prenatal-counseling-and-postnatal-outcome
#17
EDITORIAL
Sebastian Loos, Markus J Kemper
The presence of renal oligohydramnios (ROH) in a fetus has been associated in the past with a poor prognosis for survival, although recent studies have shown that survival has improved considerably due to the advances in neonatology and pediatric nephrology. In an article recently published in Pediatric Nephrology, evaluation of a large series by Mehler and colleagues confirms the improved prognosis, showing a survival rate of 32 of 38 (84%). In addition, only 12 of 35 (34%) neonates required renal replacement therapy...
November 11, 2017: Pediatric Nephrology: Journal of the International Pediatric Nephrology Association
https://www.readbyqxmd.com/read/29121791/unexpected-survivors-children-with-life-limiting-conditions-of-uncertain-prognosis
#18
Savithri Nageswaran, Anna Hurst, Andrea Radulovic
OBJECTIVE: Prognostication of survival is difficult in children with life-limiting illnesses because of the rarity of these conditions and technological advances improving survival. The objective of this article is to describe the characteristics of children with life-limiting illnesses who survived longer than the expectations of health-care providers. STUDY DESIGN: This is a retrospective cohort study conducted in a tertiary-care children's hospital in North Carolina...
April 2018: American Journal of Hospice & Palliative Care
https://www.readbyqxmd.com/read/29118890/a-novel-technique-for-the-administration-of-sub-ambient-oxygen-in-the-operating-room
#19
Asad A Khawaja, Marco Corridore, Joseph D Tobias
Hypoplastic left heart syndrome (HLHS) is a common form of congenital heart disease with abnormal development of left-sided structures of the heart. As excessive pulmonary blood flow is common prior to palliative surgical procedures, therapeutic maneuvers may be required to decrease pulmonary blood flow and augment systemic cardiac output. Respiratory manipulations to optimize the ratio of pulmonary to systemic blood flow may include techniques to induce hypercarbia or the delivery of sub-ambient concentrations of oxygen (FiO2 less than 0...
October 2017: Cardiology Research
https://www.readbyqxmd.com/read/29075889/prenatal-parental-decision-making-and-postnatal-outcome-in-renal-oligohydramnios
#20
Katrin Mehler, Ingo Gottschalk, Kathrin Burgmaier, Ruth Volland, Anja K Büscher, Markus Feldkötter, Titus Keller, Lutz T Weber, Angela Kribs, Sandra Habbig
BACKGROUND: Previous studies on renal oligohydramnios (ROH) report highly variable outcome and identify early onset of ROH and presence of extrarenal manifestations as predictors of adverse outcome in most cases. Data on termination of pregnancy (TOP) and associated parental decision-making processes are mostly missing, but context-sensitive for the interpretation of these findings. We provide here a comprehensive analysis on the diagnosis, prenatal decision-making and postnatal clinical course in all pregnancies with ROH at our medical centre over an 8-year period...
October 27, 2017: Pediatric Nephrology: Journal of the International Pediatric Nephrology Association
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