Browse Items · Pediatric Palliative Care Library

Critical care medicine in the United States 1985-2000: an analysis of bed numbers, use, and costs

OBJECTIVE: To establish a database that permits description and analysis of the evolving role, patterns of use, and costs of critical care medicine (CCM) in the United States from 1985 to 2000. DESIGN: Retrospective study combining data from federal…

Tags: 2004, Backlog, Bed Occupancy/statistics & numerical data, Comparative Study, Critical Care Medicine, Critical Care/economics/statistics & numerical data/trends/utilization, Databases, Factual, Greenstein RJ, Halpern NA, Journal Article, Non-U.S. Gov't, Pastores SM, Research Support, Retrospective Studies, United States

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

Hidden consequences of success in pediatrics: parental health-related quality of life--results from the Care Project

CONTEXT: The number of parents who care for a chronically ill child is increasing. Because of advances in medical care, parental caring tasks are changing. A detailed description of parental health-related quality of life will add to the…

Central hypothermia as a cause of acute pancreatitis in children with neurodevelopmental impairment

Children with severe neurodevelopmental impairment are at risk for recurrent hypothermia, defined as a temperature of less than 35 degrees C, as a result of hypothalamic dysfunction. Acute pancreatitis following hypothermia from environmental…

Gabapentin Successfully Manages Chronic Unexplained Irritability in Children With Severe Neurologic Impairment

Neurologically impaired children have an increased frequency of recurrent pain and irritability that persist in some despite comprehensive evaluation and management of possible pain sources. We hypothesized that visceral hyperalgesia was a source of…

Not ready for hospice: characteristics of patients in a pre-hospice program

CONTEXT: There are many patients with terminal illness for whom hospice care would be appropriate, but they either never enroll or enroll very late. In a pre-hospice program designed to help patients make the transition into hospice, we observed that…

Prognostication in hospice care: can the palliative performance scale help?

BACKGROUND: Accurate prognostication of the trajectory of an illness provides multiple benefits in end-of-life care. Prognostic information facilitates more realistic decision making regarding ongoing treatment, fosters risk-benefit considerations of…

Attitude toward and current practice of transfer and transition of adolescents with congenital heart disease in the United States of America and Europe

The objective of this study was to explore the current practice and attitudes of pediatric cardiologists in the United States and Europe on the transfer and transition of children with congenital heart disease (CHD). A survey among pediatric…

Association between religious and socio-economic background of parents of children with solid tumors and DNR orders

BACKGROUND: The influence of socio-economic and religious background on decisions made by parents of children with incurable cancer regarding DNR orders is not fully understood. PROCEDURE: A retrospective analysis of medical charts of patients who…

A Review Of Pediatric Palliative Care Service Utilization In Children With A Progressive Neuromuscular Disease Who Died On A Palliative Care Program

Recent studies and consensus statements have expressed the need to involve palliative care services in the care of children with progressive neuromuscular diseases (PMD), yet there have been no reviews of the utilization of palliative care services…

Tags: 2012, A Review Of Pediatric Palliative Care Service Utilization In Children With A Progressive Neuromuscular Disease Who Died On A Palliative Care Program, Adolescent, Child, Child Preschool, Female, Ho C, Humans, Infant, Journal of Child Neurology, Male, Neuromuscular Diseases/ Mortality/ Nursing, Palliative Care/ Methods/ Utilization, Pediatrics, Retrospective Studies, Straatman L, Terminal Care

An international/multicentre report on patients with cystic fibrosis (CF) over the age of 40 years

BACKGROUND: The lifespan of patients with cystic fibrosis (CF) is increasing significantly. The objective of this international pilot study was to study the characteristics of these long-term survivors. METHODS: Four centres with large CF clinics…

Short-term safety assessment in the use of intravenous zoledronic acid in children

The clinical side effects of the potent new bisphosphonate zoledronic acid in children are unknown. In this study of 34 children with various bone disorders, the frequency of postinfusion flu-like illness, hypocalcemia, and hypophosphatemia was 85%,…

Mortality, length of stay, bloodstream and respiratory viral infections in a pediatric intensive care unit

OBJECTIVES: We investigated whether diagnostic categories and presence of infections were associated with increased mortality or length of stay (LOS) in patients admitted to a pediatric intensive care unit (PICU). METHODS: A retrospective study of…

Natural history of nonketotic hyperglycinemia in 65 patients

BACKGROUND: Glycine encephalopathy, also known as nonketotic hyperglycinemia (NKH), is an autosomal recessive disorder caused by a defect in the glycine cleavage system. NKH is classically associated with neonatal apnea, lethargy, hypotonia, and…

Tags: 2004, Adolescent, Age of Onset, AIM, Anticonvulsants/tu [Therapeutic Use], Apnea/et [Etiology], Apnea/th [Therapy], Applegarth D, Artificial, Backlog, Child, Corpus Callosum/ab [Abnormalities], Disease Progression, Female, Glycine/bl [Blood], Glycine/cf [Cerebrospinal Fluid], Hamosh A, Health Surveys, Hoover-Fong JE, Humans, Hydrocephalus/ep [Epidemiology], Hydrocephalus/et [Etiology], Hyperglycinemia, IM, Infant, Journal Article, Juvenile/dt [Drug Therapy], Juvenile/ep [Epidemiology], Juvenile/et [Etiology], Male, Myoclonic Epilepsy, Neurology, Newborn, Nonketotic/co [Complications], Nonketotic/ep [Epidemiology], Nonketotic/me [Metabolism], Nonketotic/mo [Mortality], Nystagmus, Pathologic/ep [Epidemiology], Pathologic/et [Etiology], Pregnancy, Pregnancy Complications/ep [Epidemiology], Preschool, Psychomotor Disorders/ep [Epidemiology], Psychomotor Disorders/et [Etiology], Questionnaires, Registries, Respiration, Retrospective Studies, Seizures/dt [Drug Therapy], Seizures/ep [Epidemiology], Seizures/et [Etiology], Sex Factors, Shah S, Survival Analysis, Toone J, Van Hove JL

One-year survival and neurological outcome after pediatric cardiopulmonary resuscitation

OBJECTIVE: Reported survival after cardiopulmonary resuscitation (CPR) in children varies considerably. We aimed to identify predictors of 1-year survival and to assess long-term neurological status after in- or outpatient CPR. DESIGN: Retrospective…

Quality of life and psychological adaptation in siblings of paediatric cancer patients, 2 years after diagnosis

Several studies have been conducted on sibling psychosocial adaptation to cancer in a brother or sister, but little is known on how the long-term adaptation of siblings to the illness develops. The concept quality of life has primarily been applied…

Open lung biopsy in neonatal and paediatric patients referred for extracorporeal membrane oxygenation (ECMO)

BACKGROUND: This study was undertaken to determine the usefulness, safety, and most appropriate timing of open lung biopsy in infants and children considered for and on extracorporeal membrane oxygenation (ECMO) for respiratory failure. METHODS: A…

Causes and palliation of transfusion-associated vaginal bleeding in patients with metastatic cancer

PURPOSE: The current study was undertaken (1) to capture a clinically relevant, systematically collected series of patients with metastatic cancer and transfusion-associated vaginal bleeding and (2) to provide insight into how best to palliate this…

Aspects And Intensity Of Pediatric Palliative Case Management Provided By A Hospital-based Case Management Team

OBJECTIVES: Anticipating case management is considered crucial in pediatric palliative care. In 2012, our children's university hospital initiated a specialized pediatric palliative care team (PPCT) to deliver inbound and outbound case management for…

Tags: 2017, American Journal of Hospice and Palliative Medicine, Bosman DK, Case Management, Child, Colenbrander DA, End-of-life Care, Grootenhuis MA, Jagt Van Kampen CT, Kars MC, May 2017 List, Only Child, Palliative Care, Palliative Care Team, Pediatrics, Retrospective Studies, Schouten-Van Meeteren AYN

Aspects and intensity of pediatric palliative case management provided by a hospital-based case management team: A comparative study between children with malignant and nonmalignant disease

Objectives: Anticipating case management is considered crucial in pediatric palliative care. In 2012, our children�s university hospital initiated a specialized pediatric palliative care team (PPCT) to deliver inbound and outbound case management for…

Whom are we comforting? An analysis of comfort medications delivered to dying neonates

Incubation time required for neonatal blood cultures to become positive

AIM: We aimed to determine the laboratory detection time of bacteraemia in neonatal blood cultures, and whether this differed by: organism; samples deemed to represent true bacteraemia versus contaminants; and blood cultures collected from an infant…

Tags: 2006, Backlog, Bacteremia/blood/diagnosis/microbiology, Bacteriological Techniques/methods, Birth Weight, Blood/microbiology, Davies MW, Faoagali J, Humans, Infant, Jardine L, Journal Article, Journal of Paediatrics and Child Health, Newborn, Retrospective Studies, Sepsis/blood/diagnosis/microbiology, Time Factors

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

Children with Down syndrome: Clinical course and mortality-associated factors in a French medical paediatric intensive care unit

AIM: To investigate clinical course and mortality-associated factors in children with Down syndrome (DS) managed in a medical paediatric intensive care unit. METHODS: A single-centre, retrospective study conducted between 2001 and 2010 in DS children…

Reviewing audit: barriers and facilitating factors for effective clinical audit

OBJECTIVE: To review the literature on the benefits and disadvantages of clinical and medical audit, and to assess the main facilitators and barriers to conducting the audit process. DESIGN: A comprehensive literature review was undertaken through a…

Identifying potential need for cancer palliation in Nova Scotia

OBJECTIVE: To assess the degree to which Nova Scotia cancer patients who may need palliative care are being referred to the comprehensive Halifax-based Palliative Care Program (PCP). METHODS: The authors conducted a retrospective, population-based…

Extremely Premature Birth And The Choice Of Neonatal Intensive Care Versus Palliative Comfort Care: An 18-year Single- Center Experience.

OBJECTIVE:
Review all live births 22 0/7 through 26 6/7 weeks gestation born 1996 through 2013 at our institution to describe the decision process and immediate outcomes of palliative comfort care (PCC) versus neonatal intensive care (NICU) and…

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…

Predictive factors for do-not-resuscitate designation among terminally ill cancer patients receiving care from a palliative care consultation service.

CONTEXT: Since the development of palliative care in the 1980s, "do not resuscitate" (DNR) has been promoted worldwide to avoid unnecessary resuscitation in terminally ill cancer patients., OBJECTIVES: This study aimed to evaluate the effect of a…

Tags: 2014, Aged, Backlog, Chen JS, Chou WC, DNAR, Family/px [psychology], Female, Hsieh C-H, Hsu H-C, Huang K-G, Humans, Hung Y-S, Jaing T-H, Journal Article, Journal of Pain and Symptom Management, Kao Chen-Yi, Liau Chi-Ting, Lin Yung-Chang, Liu Chien-Ying, Liu Keng-Hao, Liver Neoplasms/di [Diagnosis], Liver Neoplasms/pp [Physiopathology], Liver Neoplasms/px [Psychology], Liver Neoplasms/th [Therapy], Male, Middle Aged, Multivariate Analysis, Neoplasms/di [Diagnosis], Neoplasms/pp [Physiopathology], Neoplasms/px [psychology], Neoplasms/th [therapy], Palliative Care, Prognosis, Referral And Consultation, Resuscitation Orders, Resuscitation Orders/px [Psychology], Retrospective Studies, Sex Factors, Shen W-C, Su Po-Jung, Taiwan, Tang Shu-Chuan, Terminally Ill, Terminally Ill/px [Psychology], Time Factors, Wang Hung-Ming, Wu Jin-Hou

Differences in characteristics of dying children who receive and do not receive palliative care

OBJECTIVE: Comparing demographic and clinical characteristics associated with receipt of palliative care (PC) among children who died in children's hospitals to those who did not receive PC and understanding the trends in PC use. METHODS: This…

Intensive care unit admission has minimal impact on long-term mortality

OBJECTIVE: To measure the association between intensive care unit (ICU) admission and both hospital and long-term mortality, separate from the effect of hospital admission alone. DESIGN: Retrospective cohort study. SETTING: All hospitals in British…

Niemann-Pick disease type C: diagnosis and outcome in children, with particular reference to liver disease

The records of 52 children with Niemann-Pick disease type C were reviewed to establish whether the disease process and outcome varied with the initial clinical pattern; 34 children (65%) had cholestatic liver disease and hepatosplenomegaly in…

Changing mortality in congenital heart disease

OBJECTIVES: This study sought to characterize temporal trends in all-cause mortality in patients with congenital heart disease (CHD). BACKGROUND: Historically, most deaths in patients with CHD occurred in early childhood. Notable advances have since…

A retrospective, multinational, multicenter study on the natural history of infantile-onset Pompe disease

OBJECTIVE: To characterize the natural progression of infantile-onset Pompe disease. STUDY DESIGN: Retrospective chart reviews of 168 patients with documented acid alpha-glucosidase deficiency and symptom onset by 12 months of age; Kaplan-Meier…

The natural history of degenerative ataxia: a retrospective study in 466 patients

The aim of the present study was (i) to compare disease progression and survival in different types of degenerative ataxia, and (ii) to identify variables that may modify the rate of disease progression. We included patients suffering from…

Juvenile neuronal ceroid lipofuscinosis (JNCL): quantitative description of its clinical variability

The clinical courses of 17 JNCL patients were analyzed retrospectively with the use of a simple, disease-specific scoring system. The mean observation period was 14 years (range 8-18 years). Scores of 0 (maximal dysfunction) to 3 (normal function)…

Tags: 1988, Acta Paediatrica, Adolescent, Adult, Albani M, Backlog, Child, Female, Follow-up Studies, Humans, Journal Article, Kohlschutter A, Laabs R, Longitudinal Studies, Male, Neuronal Ceroid-Lipofuscinoses/diagnosis, Retrospective Studies

Early peripheral nervous system manifestations of infantile Krabbe disease

Early infantile Krabbe disease is relatively frequent in the Muslim-Arab population in Israel. It can be easily diagnosed when it presents with the classic clinical picture characterized by central nervous system manifestations of spasticity,…

The Impact of Mortality on Total Costs Within the ICU

OBJECTIVES: The high cost of critical care has engendered research into identifying influential factors. However, existing studies have not considered patient vital status at ICU discharge. This study sought to determine the effect of mortality upon…

Patients with malignant hematological disorders treated on a palliative care unit: prognostic impact of clinical factors

A reliable estimation of prognosis in patients receiving palliative care is desirable in order to facilitate clinical decision finding. For patients with advanced hematological malignancies, only few data are available to estimate prognosis of the…

Antenatal Palliative Care Consultation: Implications For Decision-making And Perinatal Outcomes In A Single-centre Experience

BACKGROUND: Some pregnant patients with complex fetal anomalies meet with paediatric palliative care subspecialists prior to delivery, but referral to antenatal palliative care consultation (APCC) is not standard. Little is known about its role in…

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