Browse Items · Pediatric Palliative Care Library

Nationwide Study of Continuous Deep Sedation Practices Among Pediatric Palliative Care Teams

Abstract Context: Palliative sedation practices evolved in France when the Claeys-Leonetti law passed in 2016 authorized patient-requested continuous deep sedation (CDS) until death. Its implementation in the pediatric setting is less frequently…

The Needs of Children Receiving End of Life Care and the Impact of a Paediatric Palliative Care Team: A Retrospective Cohort Study

Evaluation of children with severe neurological impairment admitted to hospital with pain and irritability

BACKGROUND: Pain is the most common symptom reported by caregivers of children with severe neurological impairment (SNI), a descriptive term for children with disorders affecting the neurological system across multiple domains. In SNI, cognition,…

Medicinal cannabis in children and adolescents with autism spectrum disorder: A scoping review

BACKGROUND: Autism spectrum disorder (ASD) is a neurodevelopmental condition estimated to affect 1 in 66 children in Canada and 1 in 270 individuals worldwide. As effective therapies for the management of ASD core and associated symptoms are limited,…

End-Of-Life Practices in Patients Admitted to Pediatric Intensive Care Units in Brazil: A Retrospective Study

OBJECTIVE: To determine the prevalence of life support limitation (LSL) in patients who died after at least 24h of a pediatric intensive care unit (PICU) stay, parent participation and to describe how this type of care is delivered. METHODS:…

Racial and Ethnic Disparities in Medical Complexity and In-Hospital Death Among US-Born VLBW Infants

BACKGROUND AND OBJECTIVE: To assess the racial and ethnic disparity in the prevalence of complex chronic conditions (CCC) and/or in-hospital death among US-born very low birth weight (VLBW,

Tags: 2022, August 2022 List, Birth Weight, Bourque SL, Cross-sectional Studies, Ethnicity, Hannan KE, Hospital Mortality, Hospital Pediatrics, Humans, Hwang SS, Infant, Palmer C, Retrospective Studies, Tong S

Factors associated with admission of children to an intensive care unit and readmission to hospital within 28 days of discharge: A population-based study

AIM: Hospital readmissions within 28 days are an important performance measurement of quality and safety of health care. The aims of this study were to examine the rates, trends and characteristics of paediatric intensive care unit admissions, and…

Low-Resource Emergency Department Visits for Children With Complex Chronic Conditions

OBJECTIVE: Reducing emergency department (ED) use in children with complex chronic conditions (CCC) is a national health system priority. Emergency department visits with minimal clinical intervention may be the most avoidable. We assessed…

Adult healthcare is associated with more emergency healthcare for young people with life-limiting conditions

Background: Children with life-limiting conditions receive specialist paediatric care in childhood, but the transition to adult care during adolescence. There are concerns about transition, including a lack of continuity in care and that it may lead…

Tags: 2022, Adolescent, Adult, April 2022 List, Children, Cohort Analysis, Diabetes Mellitus, Flemming K, Fraser L, Hospital care, Jarvis S, Pediatric Research, Retrospective Studies, Richardson G

Admission factors associated with nutritional status deterioration and prolonged pediatric intensive care unit stay in critically ill children: PICU-ScREEN multicenter study

BACKGROUND: Early identification of patients in the pediatric intensive care unit (PICU) at risk of nutritional status (NS) deterioration and poor outcomes is desirable. We aimed to identify factors associated with NS deterioration and prolonged PICU…

Palliative sedation for children at end of life: a retrospective cohort study

BACKGROUND: Palliative sedation is consciously reducing the patient's consciousness to alleviate the refractory symptoms. However, studies on palliative sedation for children are scarce. We aimed to survey the symptom control and risks for children…

Tags: 2022, April 2022 List, BMC Palliative Care, Chen Y, Child, Children, Death, End Of Life, Humans, Hypnotics and Sedatives/therapeutic use, Jiang J, Pain, Palliative Care, Palliative sedation, Peng W, Retrospective Studies, Symptom Control, Terminal Care, Zhang C

Comparison between Rural and Urban Appalachian Children in Hospice Care

Objective The goal of this study was to compare rural and urban pediatric hospice patients in Appalachia. Methods Using a retrospective, nonexperimental design, we sought to compare characteristics of Appalachian rural and urban children younger than…

Tags: 2022, Appalachian Region, April 2022 List, Child, Cozad MJ, Fornehed MLC, Hospices, Keim-Malpass J, Lindley LC, Medicaid, Qualls KA, Retrospective Studies, Rural, Southern Medical Journal, Stone WL, Svynarenko R, Urban

Lasting Legacy: Maternal Perspectives of Perinatal Palliative Care

BACKGROUND: Many of the leading causes of infant mortality are diagnosed prenatally, presenting providers with the ability to present perinatal palliative care planning as an option. OBJECTIVE: Our study adds to the literature both by describing…

COVID-19 in pediatric palliative care: what can we learn from the pandemic and possible future directions

INTRODUCTION: Patients in pediatric palliative care (PPC) live with multiple comorbidities which represent a risk factor for severe form of COVID-19. METHODS: This monocentric retrospective study was performed at the PPC Center of Padua (Italy).…

Tags: 2021, Annali dell'Istituto Superiore di Sanità, Avagnina I, Benini F, Child, COVID-19, Epidemiology, Giacomelli L, Grigolon E, Humans, Lazzarin P, March 2022 List, Palliative Care, Pandemics, Papa S, Retrospective Studies, SARS-CoV-2, Shahi A, Zanin A

Surgical Interventions During End-of-Life Hospitalizations in Children's Hospitals

OBJECTIVES: To characterize patterns of surgery among pediatric patients during terminal hospitalizations in children's hospitals. METHODS: We reviewed patients ≤20 years of age who died among 4 424 886 hospitalizations from January 2013-December…

Neonatal donation: are newborns too young to be recognized?

Neonatal organ and tissue donation is not common practice in the Netherlands. At the same time, there is a transplant waiting list for small size-matched organs and tissues. Multiple factors may contribute to low neonatal donation rates, including a…

Discharge Communication Practices for Children With Medical Complexity: A Retrospective Chart Review

OBJECTIVES: Children with medical complexity (CMC) have an increased risk of adverse events after hospital discharge. Authors of previous studies have evaluated discharge communication practices with primary care providers (PCPs) in adults and…

Tags: 2020, Attitude Of Health Personnel, Child, Communication, Herrera N, Hospital Pediatrics, Hospitalists, Melwani A, October 2021 List, Patient Discharge, Retrospective Studies, Rush M

Care Coordination Program for Children With Complex Chronic Conditions Discharged From a Rural Tertiary-Care Academic Medical Center

OBJECTIVES: Hospital discharge offers an opportunity to initiate coordination of follow-up care, preventing readmissions or emergency department (ED) recidivism. We evaluated how revisits and costs of care varied in a 12-month period between children…

What Do We Know about Pediatric Palliative Care Patients Consulting to the Pediatric Emergency Department?

Objectives The objective of this study was to describe the characteristics of pediatric palliative care (PPC) patients presenting to a pediatric emergency department (ED) and these patients' ED visits. Methods This retrospective chart review was…

Tags: 2021, Child, Emergency Health Service, Gaucher N, Gauvin F, Hospitalization, Humbert N, Palliative Care, Pediatric Emergency Care, Referral And Consultation, Retrospective Studies, September 2021 List

Treatment limitation and advance planning: Hospital-wide audit of paediatric death

AIM: To examine paediatric deaths following withdrawal or withholding of medical treatment (WWMT) from a hospital-wide perspective and identify changes over a 10 year period. METHODS: A retrospective review of medical records was conducted for all…

Tags: 2020, advanced care planning, Audigé M, Child, Documentation, End-of-life Care, Gillam L, Hospitalization, Journal of Paediatrics and Child Health, July 2021 List, Paediatrics, Palliative Care, pediatric hospitals, Retrospective Studies, Stark Z, Terminal Care, treatment limitation

Prediction of Acquired Morbidity Using Illness Severity Indices in Pediatric Intensive Care Patients

OBJECTIVES: To assess the ability of two illness severity scores, Pediatric Logistic Organ Dysfunction Score 2 and Pediatric Index of Mortality 3, in predicting PICU-acquired morbidity. DESIGN: Retrospective chart review conducted from April 2015 to…

Validation of an Electronic Pediatric Index of Mortality 2 Score in a Mixed Quaternary PICU

OBJECTIVE: To assess the validity of an electronic version of the Pediatric Index of Mortality 2 score. DESIGN: Retrospective observational study. SETTING: Pediatric and cardiac ICUs at a quaternary medical center. PATIENTS: Patients more than 60…

Tags: 2020, Child, Cohort Studies, Crana CM, Electronics, Hospital Mortality, Humans, Infant, Intensive Care Units Pediatric, Joyce EL, Kellum JA, March 2021 List, Pediatric Critical Care Medicine, Retrospective Studies, Severity Of Illness Index, Yabes J

Lasting Legacy: Maternal Perspectives of Perinatal Palliative Care

BACKGROUND: Many of the leading causes of infant mortality are diagnosed prenatally, presenting providers with the ability to present perinatal palliative care planning as an option. OBJECTIVE: Our study adds to the literature both by describing…

Burden of treatment in the face of childhood cancer: A quantitative study using medical records of deceased children

Lived experiences of childhood cancer patients and their families have been described as interrupted and as a loss of normal life. Apart from symptoms due to the cancer disease, families continuously experience burden of treatment. Since coping…

Dystonia in neurodegeneration with brain iron accumulation: outcome of bilateral pallidal stimulation

Neurodegeneration with brain iron accumulation encompasses a heterogeneous group of rare neurodegenerative disorders that are characterized by iron accumulation in the brain. Severe generalized dystonia is frequently a prominent symptom and can be…

Respiratory complications of mucopolysaccharide storage disorders

Twenty-one patients with the diagnosis of mucopolysaccharidosis or mucolipidosis and a history of respiratory complaints or thorough respiratory evaluation were studied retrospectively. Anatomic factors affecting respiratory status included: (i)…

Tags: 1988, adenoidectomy, Adolescent, Adult, Airway Obstruction/et [Etiology], Anesthesia General/ae [Adverse Effects], beta adrenergic blockers, breathing difficulties, calcium antagonists, Cardiovascular Diseases/et [Etiology], Child, Child Preschool, digoxin, diuretics, Female, Humans, Infant, Intubation Intratracheal/ae [Adverse Effects], Lung Diseases/et [Etiology], Lung Diseases/pp [Physiopathology], Male, Medicine, MLII, MLIII, MPSI, MPSII, MPSVI, Mucopolysaccharidoses/co [Complications], Mucopolysaccharidoses/mo [Mortality], Mucopolysaccharidoses/pp [Physiopathology], pharmacologic interventions, Pyeritz R E, respiratory problems, Respiratory Tract Diseases/et [Etiology], Respiratory Tract Diseases/pp [Physiopathology], Respiratory Tract Diseases/ra [Radiography], Retrospective Studies, Semenza G L, Sleep Apnea Syndromes/et [Etiology], Spinal Diseases/et [Etiology], Spinal Diseases/ra [Radiography], surgical interventions, theophylline, Tonsillectomy, Tracheostomy

Sleep disordered breathing in childhood-onset acid maltase deficiency

OBJECTIVES: To clarify the feature of sleep disordered breathing (SDB) associated with childhood-onset acid maltase deficiency (AMD): the progressive nature of SDB and the stage of AMD.;STUDY DESIGN: We retrospectively studied 4 patients with…

Change in gross motor abilities of girls and women with rett syndrome over a 3- to 4-year period

Rett syndrome is a rare but severe neurological disorder typically associated with a mutation in the MECP2 gene. We describe change in gross motor function over 3 to 4 years for 70 subjects participating in the Australian Rett Syndrome Database.…

Esophageal strictures in children with recessive dystrophic epidermolysis bullosa: an 11-year experience with fluoroscopically guided balloon dilatation

BACKGROUND: Recessive dystrophic epidermolysis bullosa (RDEB) is an inherited blistering skin disorder that is associated with significant esophageal strictures, resulting in dysphagia and nutritional failure. Although endoscopically guided balloon…

Deep brain stimulation in children: experience and technical pearls

OBJECT: Deep brain stimulation (DBS) is an established technique for the treatment of several movement disorders in adults. However, the technical approach, complications, and results of DBS in children have not been well documented. METHODS: A…

Do-Not-Resuscitate Orders in the Neonatal ICU: Experiences and Beliefs Among Staff

OBJECTIVES: Studies in adult patients have shown that do-not-resuscitate orders are often associated with decreased medical intervention. In neonatology, this phenomenon has not been investigated, and how do-not-resuscitate orders potentially affect…

Trends in incidence, prevalence, and mortality of neuromuscular disease in Ontario, Canada: a population-based retrospective cohort study (2003-2014)

Background: Population trends of disease prevalence and incidence over time measure burden of disease and inform healthcare planning. Neuromuscular disorders (NMD) affect muscle and nerve function with varying degrees of severity and disease…

Tags: 2019, Adolescent, Adult, Age, Aged, America, Amin R, amyotrophic lateral sclerosis, amyotrophic lateral sclerosis/ep [Epidemiology], Animals, APEC countries, Article, August 2019 List, Bai Y, Canada, Child, childhood disease/ep [Epidemiology], childhood diseases, Children, Chordata, Cohort Analysis, Cohort Studies, Commonwealth of Nations, Controlled Study, Data Base, death rate, Developed Countries, Disease Course, disease prevalence, Disease Progression, Eukaryotes, Female, Gershon A, Goldstein R, Health Care, health Insurance, Hominidae, Homo, Human, Human Diseases, Incidence, Infant, International Classification of Diseases, Katz S, Leasa D, Major Clinical Study, Male, Mammals, Man, McKim D, Middle Aged, Mortality, mortality rates, muscles, neuromuscular disease/ep [Epidemiology], Neuromuscular Diseases, Neuromuscular Disorders, Nonoyama M, North America, OECD Countries, Ontario, Palliative Care, Palliative Therapy, planning, PLoS One, Population Research, Preschool Child, Prevalence, Primates, Retrospective Studies, Retrospective Study, Rose L, School Child, sclerosis, spinal muscular atrophy/ep [Epidemiology], Spine, Survival, Tandon A, trend study, Trends, Vertebrates, Young Adult

Infant deaths from congenital anomalies: novel use of Child Death Overview Panel data

OBJECTIVE: We aimed to assess Child Death Overview Panel (CDOP) data validity, and cause of death classification, by comparison with information from a local birth cohort study (Born in Bradford, BiB), and another cause of death coding system (causes…

Pain in Nonverbal Children with Medical Complexity: A Two-Year Retrospective Study

Perceptions of discrimination among Mexican American families of seriously ill children

This paper describes Mexican American family members' descriptions of perceived discrimination by pediatric health care providers (HCPs) and the families' reactions to the HCPs' discriminatory conduct. A retrospective, grounded theory design guided…

Disparities in location of death of adolescents and young adults with cancer: A longitudinal, population study in California

BACKGROUND: Patients with a terminal illness should have access to their chosen location of death. Cancer is the leading cause of non-accidental death among adolescents and young adults (AYAs; those aged 15-39 years). Although surveys have suggested…

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