Browse Items · Pediatric Palliative Care Library

Palliative Care Outcomes for Critically ill Children After Rapid Whole Genome Sequencing

Abstract Objectives: Clinical utility of rapid whole genome sequencing (rWGS) has been reported in 30-70% of pediatric ICU patients who receive a molecular diagnosis. Rapid molecular diagnostic techniques have been increasingly integrated into…

A quality improvement evaluation of a standardized intervention for children with medical complexity transitioning to adult care

Children with medical complexity have medical fragility, chronic disease, technology dependence, and high healthcare use. Their transition to adult health care at age 18 involves medical and social elements and follows no standardized process. Our…

Tags: 2024, Adams S, Adolescent, Adult, Article, assisted ventilation, Caregiver, Checklist, Child Psychiatry, Children With Medical Complexity, chronicity, Chung C, Conversation, decision support system, Demographics, dietitian, Disability, Esser K, Family physicians, feedback system, General Practitioner, Health Care Access, Health Care Personnel, Health care transition, Health Care Utilization, Hospital, Human, Information Processing, Lee S, Major Clinical Study, McKay T, Medical Record Review, Medical Technology, Moore C, Multidisciplinary team, Multiple Chronic Conditions, November List 2024, Nurse Practitioner, Orkin J, Paediatrics And Child Health, Patient Care, pediatric patient, Pediatrician, Pediatrics, pharmaceutical care, pharmacist, Quality Improvement, Rehabilitation, School, Social Worker, standardization, Total Quality Management, Transition To Adult Care, vascular access, Wagman H

Quality of Care in the Last Two Years of Life for Children with Complex Chronic Conditions

CONTEXT: Limited data exists about care received by children with complex chronic conditions (CCCs) in the final years of their disease and end-of-life (EOL). OBJECTIVE(S): To examine hospital performance on EOL quality measures and to describe…

Exploring Pediatric Code Status, Advance Care Planning, and Mode of Death Disparities at End of Life

Context: Children from marginalized groups are at risk for worse medical outcomes, yet little is known about their end of life experiences. Objective: We examine the characteristics of deceased children with a focus on race, ethnicity, and preferred…

Utility of do-not-resuscitate orders for critically ill infants in the NICU

Objective: To better understand the value of DNR orders for critically ill infants in the NICU. Methods: A prospective mixed-methods approach was utilized including chart review of infants who died in a regional NICU over a twenty-six-month period…

Paediatric Palliative Care and Anticipatory Prescribing: Just Wasteful Are We?

Aims A fundamental right for patients and their families presented with life-limiting condition, is maintaining choice, in terms of place of care and of death, with evidence to suggest that most patients and their families would prefer home.1…

A Review of pediatric Palliative Care Program in a Regional Hospital in ong Kong

Background Paediatric palliative care (PPC) focuses on the enhancement of quality of life for children with life-limiting diseases and support to their families. This study reviewed the paediatric palliative care program in Hong Kong (HK). Objectives…

Procedural Interventions for Terminally Ill Children - Are We Aiding Palliation?

Objectives: Many children undergo surgery or an invasive procedure during their terminal hospital admission.1 The types of procedures, patients, and the intent of the procedures has not been well defined. Understanding these details may help…

Specialist perinatal palliative care: a retrospective review of antenatal referrals to a children's palliative care service over 14 years

Perinatal palliative care is an emerging branch of children's palliative care. This study sought to better understand the pattern of antenatal referrals and the role of a specialist paediatric palliative care (PPC) team in supporting families…

Consultation patterns before and after embedding pediatric palliative care into a pediatric hematology/oncology clinic

Introduction: Palliative care is a critical component of pediatric oncology care. Embedded pediatric palliative care (PPC) is relatively new in pediatric hematology/oncology (PHO) and may improve access, utilization, and quality of PPC. In June 2020,…

Impact of Palliative Care Integration on End-of-Life Outcomes in Pediatric Hematopoietic Cell Transplant

Introduction: Pediatric hematopoietic cell transplant (HCT) confers a high risk of morbidity and mortality and palliative care (PC) integration in HCT may improve outcomes. PC services can aid in advanced care planning, symptom management, and…

Early Integration of Pediatric Palliative Care in Pediatric Hematopoietic Stem Cell Transplant Patients

Topic significance and study purpose/background/rationale: Patients undergoing hematopoietic stem cell transplant (HSCT) are at risk for significant morbidity and mortality and experience distressing psychological and physical symptoms. Access to…

Introduction of triggers for palliative care consultation improve utilization and and satisfaction within a level 4 NICU

The use of a palliative care guideline in infants remains controversial in the NICU community. Triggers are only intermittently utilized within the NICU setting. Most NICUs implement strategies for near-death care, but few have guidelines for those…

Tags: 2018, April 2020 List, Awareness, conference abstract, Controlled Study, Human, Infant, Leadership, Medical Record Review, Needs Assessment, Nguyen L T, Nurse, Palliative Therapy, Patient Referral, Pediatrics, Physician, Practice Guideline, Satisfaction, Spear M L

Paediatric long-term home ventilation: Should we rethink social inclusion for these children?

Background: over the last 30 yrs, many studies have investigated long-term ventilatory support (LTVS), focusing primary on medical issues. Few researches have focused on social burden for families with a child in need of LTVS. Objectives: aim of the…

Parent-Reported Outcomes of Prognostic Communication in Hospitalized Children with Advanced Heart Disease (S762)

Objectives: * Describe a prospective study to evaluate how parents of children with advanced heart disease (AHD) perceive communication about prognosis with their child's physicians. * Describe results from this analysis that found no correlation…

Vulnerable Populations Receiving Palliative Radiation in a Children's Hospital: Reporting on the Underreported

Purpose/Objective(s): Few studies have examined the use of palliative radiation therapy (RT) in the pediatric population. This single institution study is one of the largest series reported of palliative RT practice patterns prior to and within the…

Supplementation with carnitine reduces the severity of constipation: A retrospective study of patients with severe motor and intellectual disabilities

Carnitine is an essential nutrient for the mitochondrial transport of fatty acids. Carnitine deficiency causes a variety of symptoms in multiple organs. Patients with severe motor and intellectual disabilities often have carnitine deficiency. This…

Tags: 102767-28-2 (levetiracetam), 1069-66-5 (valproic acid), 1309-48-4 (magnesium oxide), 1317-74-4 (magnesium oxide), 14093-02-8 (iron), 14378-32-6 (zinc), 146-22-5 (nitrazepam), 1622-61-3 (clonazepam), 2017, 22316-47-8 (clobazam), 298-46-4 (carbamazepine), 461-06-3 (carnitine), 50-06-6 (phenobarbital), 53858-86-9 (iron), 541-15-1 (carnitine), 56-99-5 (carnitine), 57-30-7 (phenobarbital), 57-88-5 (cholesterol), 59-30-3 (folic acid), 6484-89-5 (folic acid), 68291-97-4 (zonisamide), 7439-89-6 (iron), 7440-66-6 (zinc), 7782-49-2 (selenium), 8028-68-0 (phenobarbital), 8047-84-5 (carbamazepine), 84057-84-1 (lamotrigine), 99-66-1 (valproic acid), acute brain disease, Adult, albumin, albumin blood level, anticonvulsant therapy, Aomatsu T, Article, bacterial meningitis, bed rest, body mass, brain infarction, carbamazepine/dt [Drug Therapy], carnitine, carnitine deficiency, carnitine deficiency/dt [Drug Therapy], carnitine/dt [Drug Therapy], Cerebral Palsy, Child, cholesterol blood level, cholesterol/ec [Endogenous Compound], Clinical Article, Clinical Trial, clobazam/dt [Drug Therapy], clonazepam/dt [Drug Therapy], Constipation, constipation/dt [Drug Therapy], constipation/pc [Prevention], Controlled Study, copper blood level, cupric ion/ec [Endogenous Compound], diet supplementation, Disease Severity, Endogenous Compound, enema/dt [Drug Therapy], enteric feeding, epilepsy/dt [Drug Therapy], Female, folic acid, folic acid blood level, folic acid/ec [Endogenous Compound], Gene Expression, groups by age, Hospital, Human, Human Tissue, infantile spasm, Inoue K, Intellectual Impairment, iron blood level, iron/ec [Endogenous Compound], Journal of Clinical Biochemistry and Nutrition, lamotrigine/dt [Drug Therapy], levetiracetam/dt [Drug Therapy], magnesium oxide/dt [Drug Therapy], Male, Medical Record Review, Middle Aged, motor dysfunction, Murata S, NCL3, neuronal ceroid lipofuscinosis, nitrazepam/dt [Drug Therapy], Pelizaeus Merzbacher disease, Pelizaeus- Merzbacher disease, periventricular leukomalacia, pharmacologic intervention, phenobarbital/dt [Drug Therapy], prealbumin, prealbumin/ec [Endogenous Compound], Preschool Child, Retrospective Study, School Child, selenium blood level, selenium/ec [Endogenous Compound], sex difference, Tamai H, trace element, Tuberous Sclerosis, valproic acid, valproic acid/dt [Drug Therapy], West syndrome, Yoden A, Young Adult, zinc/ec [Endogenous Compound], zonisamide/dt [Drug Therapy]

Pediatric Resident Experience Caring for Children at the End of Life in a Children's Hospital

OBJECTIVES: Pediatric residents are expected to be competent in end of life (EOL) care. We aimed to quantify pediatric resident exposure to patient deaths, and the context of these exposures. METHOD(S): Retrospective chart review of all deceased…

Differences in Advance Care Planning and Circumstances of Death for Pediatric Patients Who Do and Do Not Receive Palliative Care Consults: A Single-Center Retrospective Review of All Pediatric Deaths from 2012 to 2016

Background: Growing evidence suggests that pediatric palliative care (PPC) teams influence the care received by children and young adults with chronic, life-limiting illnesses. Little is known about how PPC involvement affects advance care planning…

Access to Pediatric Palliative Care in the Neonatal Intensive Care Unit by Minorities and Rural-Dwellers in the Deep South: Patterns of Care from 2009-2017 (S816)

Objectives: 1. Describe patterns of pediatric palliative care and care disparities in neonatal intensive care unit (NICU) patients and families hospitalized in the Deep South (Alabama, Louisiana, and Mississippi). 2. Describe implications for…

The aggressive end-of-life care in pediatric cancer patients in taiwan

Background/Objectives: Despite the dramatically improved outcomes for pediatric cancer patients, cancer is the leading cause of death in Taiwan, accounting for 21.8% of death in 2014. The pediatric end-of-life (EOF) care has not been extensively…

Neonatal Palliative Care in the United States Deep South: Exploration of Patterns of Care and Health Disparities

Background: In 2013, 23,446 infants died in the U.S.. For infants hospitalized in the neonatal intensive care unit (NICU), advances in medicine have prolonged the lives of many infants who would not have previously survived, resulting in complex…

Ethical dilemmas encountered by a palliative care team at a Pediatric cancer center in guatemala

A new kind of language barrier: Examining disparities in medical teams' referrals of palliative care patients to Pediatric psychology

Background/Objectives: As cancer care has improved, so has the understanding that children with cancer are at risk for psychological distress. The American Academy of Pediatrics has highlighted the importance of addressing these concerns. Our study…

Patterns of paediatric end-of-life care: A chart review across different care settings in Switzerland

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…

Tags: 103-90-2 (paracetamol), 2018, Adolescent, Aebi C, Ansari M, Article, Baer R, Bergstraesser E, Bernet V, Bmc Pediatrics, Brazzola P, Bucher HU, Buder R, Cagnazzo S, Cardiology, Cause Of Death, Child, Child Care, Child Death, Cignacco E, Cohort Analysis, community care, Dinten B, Dorsaz A, Drug Use, Elmer F, Engberg S, Enriquez R, Eskola K, Fahrni-Nater P, Female, Finkbeiner G, Frey B, Frey U, Greiner J, Hassink RI, Health Care Utilization, Home Care, Hospital Admission, Human, Infant, Intensive Care Unit, invasive procedure, Keller S, Kretschmar O, Kroell J, Laubscher B, Leibundgut K, Length Of Stay, Life Sustaining Treatment, Major Clinical Study, Malaer R, Male, Medical Record Review, Meyer A, narcotic analgesic agent, Nelle M, Neonatology, Neuhaus T, Neurology, Newborn, Niggli F, October 2018 List, Oncology, Paracetamol, Perrenoud G, Pfammatter JP, Plecko B, Popovic MB, Ramelet AS, Resuscitation, Retrospective Study, Rupf D, Sennhauser F, September 2018 List, Stade C, Steinlin M, Stoffel L, Stuessi C, Switzerland, Terminal Care, Thomas K, Treatment Withdrawal, Von der Weid N, von Vigier R, Vonarburg C, Wagner B, Wernz B, Wieland J, Zimmermann K

Development of symptom assessment service at a children's hospice

Background and aims High symptom burden has been recognised in children with life-limiting conditions (LLC) and symptom assessment and management is a core component of children's palliative care (CPC). A previous audit highlighted a high prevalence…

Single-center Experience Providing Palliative Care To Pediatric Patients With End-stage Renal Disease

Background: End-stage renal disease (ESRD) affects nearly 1400 new children each year in the United States. Morbidity and mortality rates remain high for pediatric patients with ESRD, including those that have received a renal transplant. Objective:…

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