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Pediatric palliative

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https://www.readbyqxmd.com/read/27923105/providing-palliative-care-in-rare-pediatric-diseases-a-case-series-of-three-children-with-congenital-disorder-of-glycosylation
#1
Amy Trowbridge, Miriam T Stewart, Eileen Rhee, Jennifer M Hwang
Pediatric palliative care providers often care for children with rare, poorly understood diseases. In addition to grappling with a life-limiting diagnosis, families face complexity in decision making stemming from the prognostic uncertainty surrounding their child's rare condition. We discuss several unique challenges, illustrated through case studies of three children who shared the rare diagnosis of congenital disorder of glycosylation.
December 6, 2016: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/27920347/effectiveness-of-pediatric-palliative-care-education-on-pediatric-clinicians
#2
Niang-Huei Peng, Cheng-Han Lee, Min-Chun Lee, Li-Chi Huang, Yue-Cune Chang, Joetta DeSwarte-Wallace
A lack of knowledge and skills in pediatric palliative care may create hesitation in caring for children with serious life-threatening conditions and their families. Our research examined the effectiveness of pediatric palliative care training for pediatric clinicians. A pretest-posttest study provided educational training in pediatric palliative care to pediatric clinicians and used a pretest and a posttest to assess outcomes. Fifty pediatric clinicians attended this research with 83.3% response rate. After training, participants reported significantly increased confidence in a variety of areas, including providing emotional support to clinicians, personal knowledge, skills, and communication; ethical and legal concerns; and providing emotional support to dying children and their families...
December 5, 2016: Western Journal of Nursing Research
https://www.readbyqxmd.com/read/27901408/four-steps-to-eliminate-or-reduce-pain-in-children-caused-by-needles-part-1
#3
Stefan J Friedrichsdorf
Dr Stefan Friedrichsdorf* speaks to Jade Parker, Commissioning Editor: Stefan J Friedrichsdorf, MD, is medical director of the Department of Pain Medicine, Palliative Care and Integrative Medicine at Children's Hospitals and Clinics of Minnesota, Minneapolis/St Paul, MN, USA, home to one of the largest and most comprehensive programs of its kind in the country. The interdisciplinary pain team is devoted to prevent and treat acute, procedural, neuropathic, psycho-social-spiritual, visceral, and chronic/complex pain for all inpatients and outpatients in close collaboration with all pediatric subspecialties at Children's Minnesota...
November 30, 2016: Pain Management
https://www.readbyqxmd.com/read/27857784/pyridoxine-dependent-convulsions-among-children-with-refractory-seizures-a-3-year-follow-up-study
#4
Sadanandavalli Retnaswami Chandra, Thomas Gregor Issac, Sai Deepak, Ravi Teja, Seby Kuruthukulangara
INTRODUCTION: Epilepsy accounts for 1% of the global disease burden and about 8-10 million epilepsy patients live in India. About 30-40% of these patients become drug-resistant and land up with palliative or disease-modifying surgeries. This is a situation causing great concern in view of the psychosocial and economic burden on the patient and the family apart from severe cognitive and motor consequences, especially in children. Therefore, it is mandatory to have an insight into the wide spectrum of causes with reference to refractoriness to antiepileptic medications in children with epilepsy...
July 2016: Journal of Pediatric Neurosciences
https://www.readbyqxmd.com/read/27850037/397-a-survey-of-pediatric-critical-care-fellows-on-palliative-care-principles-applied-in-the-icu-setting
#5
Jaime Jump, Mindy Dickerman
No abstract text is available yet for this article.
December 2016: Critical Care Medicine
https://www.readbyqxmd.com/read/27848889/contemporary-pediatric-palliative-care-myths-and-barriers-to-integration-into-clinical-care
#6
Stefan J Friedrichsdorf
At least 20 million children would benefit from Pediatric Palliative Care (PPC) annually, and 8 million children would need specialized PPC services. In the USA alone, more than 42,000 children 0-19 years died in 2013, fifty-five percent of them infants younger than 1 year. This article aims to critically review eight common assumptions, myths and barriers, which may hinder the implementation of PPC into the care of a child with advanced serious illnesses. Interdisciplinary PPC is about matching treatment to patient goals and is considered specialized medical care for children with serious illness...
November 15, 2016: Current Pediatric Reviews
https://www.readbyqxmd.com/read/27834759/current-expectations-for-cardiac-transplantation-in-patients-with-congenital-heart-disease
#7
James K Kirklin, Waldemar F Carlo, F Bennett Pearce
Congenital heart disease accounts for 40% of pediatric heart transplants and presents unique challenges to the transplant team. Suitability for transplantation is defined in part by degree of sensitization, pulmonary vascular resistance, and hepatic reserves. The incremental transplant risk for patients with congenital heart disease occurs within the first 3 months, after which survival is equivalent to transplantation for cardiomyopathy. Single ventricle with prior palliation, and especially the failing Fontan, carry the highest risk for transplantation and are least amenable to bridging with mechanical circulatory support...
November 2016: World Journal for Pediatric & Congenital Heart Surgery
https://www.readbyqxmd.com/read/27813698/pregnancy-and-pediatric-palliative-care
#8
Rachel Thienprayoon
No abstract text is available yet for this article.
November 4, 2016: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/27803957/interstage-survival-for-patients-with-hypoplastic-left-heart-syndrome-after-ecmo
#9
Richard P Fernandez, Brian F Joy, Robin Allen, Jamie Stewart, Holly Miller-Tate, Yongjie Miao, Lisa Nicholson, Clifford L Cua
There is a reported 5-20 % incidence of extracorporeal membrane oxygenation (ECMO) following stage I palliation for hypoplastic left heart syndrome (HLHS). This study compares the interstage mortality of HLHS patients supported with ECMO (HLHS-ECMO) to those who were not supported with ECMO (HLHS-nECMO) using the National Pediatric Cardiology Quality Improvement Initiative database. Patients with HLHS who survived to hospital discharge after stage I palliation were analyzed. HLHS-ECMO patients were compared to HLHS-non-ECMO patients with respect to demographics, surgical variables, and interstage survival...
November 1, 2016: Pediatric Cardiology
https://www.readbyqxmd.com/read/27801708/pediatric-critical-care-transport-as-a-conduit-to-terminal-extubation-at-home-a-case-series
#10
Corina Noje, Meghan L Bernier, Philomena M Costabile, Bruce L Klein, Sapna R Kudchadkar
OBJECTIVES: To present our single-center's experience with three palliative critical care transports home from the PICU for terminal extubation. DESIGN: We performed a retrospective chart review of patients transported between January 1, 2012, and December 31, 2014. SETTING: All cases were identified from our institutional pediatric transport database. PATIENTS: Patients were terminally ill children unable to separate from mechanical ventilation in the PICU, who were transported home for terminal extubation and end-of-life care according to their families' wishes...
October 28, 2016: Pediatric Critical Care Medicine
https://www.readbyqxmd.com/read/27799177/non-invasive-measurement-of-renal-perfusion-and-oxygen-metabolism-to-predict-postoperative-acute-kidney-injury-in-neonates-and-infants-after-cardiopulmonary-bypass-surgery
#11
F Neunhoeffer, M Wiest, K Sandner, H Renk, E Heimberg, C Haller, M Kumpf, C Schlensak, M Hofbeck
BACKGROUND: The pathophysiology of acute kidney injury (AKI) after cardiopulmonary bypass surgery for congenital heart disease is not completely understood. The aim of this study was to carry out a prospective analysis of the diagnostic value of non-invasive monitoring of renal oxygenation and microcirculation by combining laser Doppler flowmetry and tissue spectrometry. METHODS: In 50 neonates and infants who underwent repair (n = 31) or neonatal palliation (n = 19) of congenital heart disease with cardiopulmonary bypass, renal oxygenation, and microcirculatory flow, the approximate renal metabolic rate of oxygen and Doppler-based renal resistive index were determined after surgery...
November 2016: British Journal of Anaesthesia
https://www.readbyqxmd.com/read/27792463/pocket-reference-card-improves-pediatric-resident-comfort-in-caring-for-children-at-end-of-life
#12
Emily M Balkin, Katherine Ort, Robert Goldsby, Jessica Duvall, Cynthia D Kim
BACKGROUND: Studies have shown that pediatricians in all stages of training are uncomfortable managing patients at end of life. Our goal was to create and test a portable reference card to improve pediatric resident education in comprehensive care for children nearing end of life. METHODS: We evaluated the impact of the Pediatric End-of-Life Care Management Reference Card on residents' perceived comfort and knowledge through pre- and post-intervention surveys. The preintervention questionnaires and pocket cards were distributed to all first- and second-year residents, and then a follow-up survey was provided six months later...
October 28, 2016: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/27754765/nurses-experiences-of-spiritual-communication-with-seriously-iii-children
#13
Betty Ferrell, Elaine Wittenberg, Vanessa Battista, Gay Walker
OBJECTIVE: The goal of this study was to explore nurse experiences in communication with children about spiritual topics in order to develop training in this area. BACKGROUND: Although spiritual care is essential in pediatric palliative care, few providers receive training about communication with ill children about spirituality. METHODS: Researchers developed a brief survey to prompt nurses to reflect on pediatric palliative care experiences that included spiritual discussions...
November 2016: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/27749020/advance-care-planning-in-adolescents-with-cystic-fibrosis-a-quality-improvement-project
#14
Traci M Kazmerski, Daniel J Weiner, Janice Matisko, Diane Schachner, Whitney Lerch, Carol May, Scott H Maurer
INTRODUCTION: Advance care planning (ACP), though recommended, has not been studied in adolescents with cystic fibrosis (CF). This quality improvement project engaged adolescents with advanced CF disease in ACP and assessed patient and CF provider attitudes and preferences regarding ACP discussions and tools. MATERIALS AND METHODS: Patients ≤22 years with advanced CF (FEV1 ≤40% predicted, >2 pulmonary exacerbations requiring IV antibiotics in 1 year, and/or use of home oxygen or non-invasive ventilation) were referred to the pediatric palliative care team (PC)...
December 2016: Pediatric Pulmonology
https://www.readbyqxmd.com/read/27737404/analysis-of-surgical-mortality-for-congenital-heart-defects-using-rachs-1-risk-score-in-a-brazilian-single-center
#15
Candice Torres de Melo Bezerra Cavalcante, Nayana Maria Gomes de Souza, Valdester Cavalcante Pinto, Klébia Magalhães Pereira Castello Branco, Ronald Guedes Pompeu, Andreia Consuelo de Oliveira Teles, Rodrigo Cardoso Cavalcante, Giselle Viana de Andrade
Introduction: Risk Adjustment for Congenital Heart Surgery 1 (RACHS-1) score is a simple model that can be easily applied and has been widely used for mortality comparison among pediatric cardiovascular services. It is based on the categorization of several surgical palliative or corrective procedures, which have similar mortality in the treatment of congenital heart disease. Objective: To analyze the in-hospital mortality in pediatric patients (<18 years) submitted to cardiac surgery for congenital heart disease based on RACHS-1 score, during a 12-year period...
May 2016: Brazilian Journal of Cardiovascular Surgery
https://www.readbyqxmd.com/read/27693902/the-effect-of-pediatric-palliative-care-policy-on-hospice-utilization-among-california-medicaid-beneficiaries
#16
Lisa C Lindley
CONTEXT: California implemented pediatric palliative care legislations that allowed children to receive curative and supportive care from diagnosis of a life-threatening serious illness in 2010. Palliative care policies may improve access to hospice care as children near end of life. OBJECTIVES: The aim of this study was to examine the effect of the palliative care policy on hospice utilization for children and their families was investigated. METHODS: Using 2007 and 2010 California Medicaid data, a difference-in-difference analysis was conducted to analyze hospice use (i...
November 2016: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/27693899/a-comparison-of-circumstances-at-the-end-of-life-in-a-hospital-setting-for-children-with-palliative-care-involvement-versus-those-without
#17
Kaci Osenga, Andrea Postier, Jill Dreyfus, Laurie Foster, Wrenda Teeple, Stefan J Friedrichsdorf
CONTEXT: Specialized pediatric palliative care (PPC) services have become more common in urban pediatric hospital settings, although little is known about palliative care specialist involvement. OBJECTIVES: The objective of this study was to compare circumstances before death in children who spent their last days of life in an inpatient pediatric hospital setting, with or without PPC provider involvement during their inpatient stay. METHODS: Retrospective chart review of medical records of children for the last inpatient stay that resulted in death at a children's hospital setting between January 2012 through June 2013...
November 2016: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/27685423/secondary-combined-immunodeficiency-in-pediatric-patients-after-the-fontan-operation-three-case-reports
#18
Eva Hlavackova, Martin Liska, Hana Jicinska, Jiri Navratil, Jiri Litzman
The Fontan operation or total cavopulmonal connection (TCPC) is a palliative surgical correction of rare and complex inborn cardiac malformations that are characterized by univentricular circulation. Protein-losing enteropathy (PLE) develops in 4-13% of patients after the Fontan procedure. Fontan-related PLE leads to secondary combined immunodeficiency marked by hypogammaglobulinemia and predominantly CD4+ lymphocytopenia. Here, we present 3 case reports of patients with secondary immunodeficiency after the Fontan operation...
September 30, 2016: International Archives of Allergy and Immunology
https://www.readbyqxmd.com/read/27676853/pediatric-rehabilitation-and-pediatric-oncology-a-winner-association-the-experience-of-grenoble-pediatric-hospital
#19
Véronique Bourg, Anne Descotes, Anne Pagnier, Jacques Griffet, Dominique Plantaz
The Child and Family Hospital of Grenoble is one of the rare university hospitals in France to benefit from the presence of a physician specializing in rehabilitation medicine. This hospital includes both inpatient and outpatient units. During the temporary closure of one department, certain members of the rehabilitation unit were reassigned to the acute care wards of the pediatric department, including physical therapists, occupational therapists, and speech therapists. Over the course of one year, these therapists completed more than 150 interventions in this department, more than half of which were in the hematology and oncology ward...
September 2016: Annals of Physical and Rehabilitation Medicine
https://www.readbyqxmd.com/read/27675646/clinical-outcomes-of-palliative-radiation-therapy-for-pediatric-oncology-patients
#20
A D Rao, S R Alcorn, J Moore, S A Terezakis
No abstract text is available yet for this article.
October 1, 2016: International Journal of Radiation Oncology, Biology, Physics
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