Browse Items · Pediatric Palliative Care Library

"The worst journey of our lives": parents' experiences of a specialised paediatric retrieval service

In this retrospective study, a sample of 233 parents were surveyed, by means of a postal questionnaire, about their experience of a specialised paediatric retrieval service (median time interval after child's retrieval=10 months). Although all…

Tags: 2003, Backlog, Child, Colville G, Consumer Satisfaction/statistics & numerical data, Gracey D, Humans, ICU Decision Making, Intensive and Critical Care Nursing, Intensive Care Units, Journal Article, London, Nonparametric, Orr F, Parents/psychology, Pediatric, Retrospective Studies, Statistics, Transportation of Patients/standards

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,…

Safety of subcutaneous clodronate and efficacy in hypercalcemia of malignancy: a novel route of administration

Bisphosphonates have become standard treatment in management of malignancy-induced hypercalcemia and malignant bone pain. One obstacle to the routine use of bisphosphonates in palliative patients is that oral bisphosphonates have low bioavailability…

The symptoms of dying children.

The purpose of this study was to examine the symptom prevalence, characteristics, and distress of children dying in hospital. Symptoms during the last week of life were obtained from the medical records. Symptoms and their characteristics during the…

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%,…

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…

Simple changes can improve conduct of end-of-life care in the intensive care unit.

PURPOSE: To describe changes to the conduct of withdrawal of life support (WOLS) in two teaching hospital tertiary care medical surgical intensive care units (ICUs) in a single centre over two distinct time periods., METHODS: We used a 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…

Bone scan as a screening tool in children and adolescents with back pain

Retrospective review of 142 patients from 2 teaching hospitals, investigated for persistent backache. The inclusion criteria were to be up to 18 years, to have no known associated diseases, and to have had a bone scan as a part of their work up.…

Developing the Liverpool Care Pathway for the dying child

In most western societies the death of a child is a rare occurrence. When it does occur, it typically takes place after a period of intensive and often prolonged treatment. In light of the relative infrequency of these events in clinical practice,…

The use of conscious sedation for pain control during forearm fracture reduction in children: does race matter?

Recent reports in the medical literature indicate that certain racial disparities have been identified in healthcare. The authors sought to identify the potential relationship between the use of pain medications in African-American and Caucasian…

Review of pediatric autopsies performed at a university hospital in Ribeirao Preto, Brazil

CONTEXT: Autopsy continues to provide important data for quality assurance, teaching, scientific purposes, and health planning, especially if performed according to a comprehensive protocol. OBJECTIVE: To describe and analyze data from all perinatal…

Long-term use of peripherally inserted central venous catheters for cancer chemotherapy in children

BACKGROUND: Peripherally inserted central venous catheters (PICCs) have been increasingly used in pediatric patients. However, little is known about the incidence and risk of complications when using this device in children with cancer. The purposes…

The natural history of juvenile or subacute GM2 gangliosidosis: 21 new cases and literature review of 134 previously reported.

OBJECTIVE: Juvenile GM2 gangliosidosis is a group of inherited neurodegenerative diseases caused by deficiency of lysosomal beta-hexosaminidase resulting in GM2 ganglioside accumulation in brain. The purpose of this study was to delineate the natural…

Gastrostomy tube feeding in children with cerebral palsy: a prospective, longitudinal study

We report a longitudinal, prospective, multicentre cohort study designed to measure the outcomes of gastrostomy tube feeding in children with cerebral palsy (CP). Fifty-seven children with CP (28 females, 29 males; median age 4y 4mo, range 5mo to 17y…

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

Advanced illness index: Predictive modeling to stratify elders using self-report data

OBJECTIVES: Develop a prediction model to identify persons who have an increased risk of dying within the next 36 months, in order to focus additional resources and assessment in areas related to advanced care planning. DESIGN: Retrospective study…

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…

Impact of palliative care case management on resource use by patients dying of cancer at a Veterans Affairs medical center

BACKGROUND: The VA Puget Sound Health Care System (VAPSHCS) started a palliative care service (PCS) in October 2001 to provide case management for patients with advanced cancer. OBJECTIVE: To examine resource use during the last 60 days of life for…

Use of health care among adults with chronic and complex physical disabilities of childhood

PURPOSE. The purpose of this study was to explore the patterns of health services utilization among adults with chronic and complex physical disabilities of childhood, specifically cerebral palsy, spina bifida, and acquired brain injuries.METHODS. A…

The ocular features of the mucopolysaccharidoses

AIMS: The mucopolysaccharidoses (MPS) are a heterogeneous group of rare disorders characterised by accumulation of glycosaminoglycans within multiple organ systems. This study aimed to determine the prevalence and severity of ocular complications in…

Resource utilization for ovarian cancer patients at the end of life: how much is too much?

OBJECTIVE: End-of-life (EOL) medical care consumes 10-12% of national health care expenditures and 27% of Medicare dollars annually. Studies suggest that hospice services decrease EOL expenditures by 25-40%. The goal of this study was to compare the…

The natural history of medium-chain acyl CoA dehydrogenase deficiency in the Netherlands: clinical presentation and outcome

OBJECTIVES: To describe the clinical presentation and long-term follow-up of a large cohort of patients with medium-chain acyl-CoA dehydrogenase (MCAD) deficiency. STUDY DESIGN: A nationwide, retrospective analysis of clinical presentation and…

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…

Parent resuscitation preferences for young people with severe developmental disabilities.

OBJECTIVE: To determine the relationship of providing explanatory information regarding resuscitation to DNR status for parents and guardians of young people who reside in a pediatric skilled nursing facility., DESIGN: Retrospective,…

Tags: 2006, Adolescent, Adult, Advance Care Planning/og [Organization & Administration], Advance Care Planning/organization & Administration, Analysis of Variance, Attitude To Health, Backlog, Child, Choice Behavior, Consent Forms, Developmental Disabilities/co [Complications], Developmental Disabilities/complications/therapy, Developmental Disabilities/th [Therapy], DNAR, Documentation, Female, Friedman SL, Health Education/og [Organization & Administration], Health Education/organization & administration, Humans, Journal Article, Journal Of The American Medical Directors Association, Male, Massachusetts, Organizational Policy, Parents, Parents/ed [education], Parents/education/psychology, Parents/px [psychology], Preschool, Program Evaluation, Resuscitation Orders/psychology, Resuscitation Orders/px [Psychology], Retrospective Studies, Skilled Nursing Facilities/og [Organization & Administration], Skilled Nursing Facilities/organization & administration, Treatment Refusal/psychology, Treatment Refusal/px [Psychology]

Mothers' recollections of the Paediatric Intensive Care Unit: associations with psychopathology and views on follow up

The aim of this study was to establish rates of posttraumatic stress symptoms in mothers after a child's admission to a Paediatric Intensive Care Unit (PICU) and their views on the potential value of a follow up appointment with PICU staff.…

Trisomy 18 in neonates: prenatal diagnosis, clinical features, therapeutic dilemmas and outcome

The study aimed to analyse the clinical courses of aggressively treated neonates with cytogenetically confirmed trisomy 18, with special attention focused on the efficiency of prenatal diagnostics, associated malformations, therapeutic dilemmas and…

Clinical characteristics and survival of trisomy 18 in a medical center in Taipei, 1988-2004.

Trisomy 18 is the second most common autosomal trisomy in newborns. The birth prevalence of this disorder is approximately 1 in 3,000 to 1 in 8,000, and the life span of the majority of patients is less than 1 year. As information regarding outcome…

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…

Outcomes in children after intestinal transplant

OBJECTIVE: The survival rates after pediatric intestinal transplant according to underlying disease are unknown. The objective of our study was to describe the population of pediatric patients receiving an intestinal transplant and to evaluate…

Neuroimaging-use trends in nonacute pediatric headache before and after clinical practice parameters

OBJECTIVES: The objective of this study was to determine trends in diagnostic neuroimaging-use rates in nonacute pediatric headache before and after publication of clinical practice guidelines. METHODS: Retrospective, cross-sectional analysis was…

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…

Long-term outcome and clinical spectrum of 73 pediatric patients with mitochondrial diseases

OBJECTIVES: We sought to determine the clinical spectrum, survival, and long-term functional outcome of a cohort of pediatric patients with mitochondrial diseases and to identify prognostic factors. METHODS: Medical charts were reviewed for 73…

Tags: 2007, AIM, Backlog, Cause Of Death, Chevalier I, Child, Cohort Studies, Debray FG, Decarie JC, DNA, DNA Fragmentation, Female, Follow-up Studies, HEREDITARY, Humans, IM, Infant, Journal Article, Lambert M, Leber/di [Diagnosis], Leber/ge [Genetics], Leber/mo [Mortality], Longitudinal Studies, Male, MELAS Syndrome/di [Diagnosis], MELAS Syndrome/mo [Mortality], MELAS Syndrome/th [Therapy], Mitchell GA, Mitochondrial Diseases/di [Diagnosis], Mitochondrial Diseases/ge [Genetics], Mitochondrial Diseases/mo [Mortality], Mitochondrial Encephalomyopathies/di [Diagnosis], Mitochondrial Encephalomyopathies/mo [Mortality], Mitochondrial Encephalomyopathies/th [therapy], Mitochondrial Myopathies/di [Diagnosis], Mitochondrial Myopathies/ge [Genetics], Mitochondrial Myopathies/mo [Mortality], Mitochondrial/ge [Genetics], Newborn, Optic Atrophy, Pediatrics, Preschool, Probability, Proportional Hazards Models, Q3 Scoping Review Results, Retrospective Studies, Robinson BH, Robitaille Y, Severity Of Illness Index, Shoubridge EA, Survival Analysis, Time Factors

Efficacy and tolerability of levetiracetam versus phenytoin after supratentorial neurosurgery

BACKGROUND: Antiepileptic drugs are routinely given after craniotomy. Though phenytoin (PHT) is still the most commonly used agent, levetiracetam (LEV) is increasingly administered for this purpose. This retrospective study compared the use of LEV…

The triad that matters: palliative medicine, code status, and health care costs.

INTRODUCTION: Delayed discussion of a patient's code status can lead to shortsighted care plans that increase hospital length of stay (LOS) and costs., METHODS: Retrospective study compared intensive care unit (ICU) patients who accepted verses…

Tags: 2010, 80 And Over, Aged, Backlog, Celso BG, Code status, Critical Illness/ec [Economics], Critical Illness/ep [Epidemiology], Direct Service Costs/sn [Statistics & Numerical Data], DNAR, DNAR Outcomes, Emergency Service, Equipment and Supplies, Female, Health Care Cost, Hospice, Hospital Costs/sn [Statistics & Numerical Data], Hospital/ec [Economics], Hospital/ut [Utilization], Humans, Intensive Care/ec [Economics], Intensive Care/ut [Utilization], Journal Article, Laboratories, Length of Stay/ec [Economics], Length of Stay/sn [Statistics & Numerical Data], Male, Meenrajan S, Middle Aged, Operative/ec [Economics], palliation, Palliative Care/ec [economics], Palliative Care/ut [Utilization], Patient Admission, Radiology Department, Respiratory Care Units/ec [Economics], Retrospective Studies, Surgical Procedures, The American Journal of Hospice & Palliative Care, United States/ep [Epidemiology]

Incidental neuroimaging findings in nonacute headache

We studied the frequency and consequences of incidental neuroimaging findings in 400 otherwise healthy, nonacute pediatric headache patients through a retrospective, cross-sectional analysis. We excluded patients with currently recommended clinical…

Diagnostic yield of brain biopsies in children presenting to neurology

The role of brain biopsy is well established in patients with neoplastic lesions, with a diagnostic yield approaching 95%. The diagnostic yield of brain biopsy in adults with neurological decline varies from 20% to 43%. Only a few studies have…

A Report On Location of Death in Paediatric Palliative Care Between Home, Hospice and Hospital

This retrospective study analysed data for 703 children who died from 2000 to 2006 to examine where children with a broad range of progressive, life-limiting illnesses actually die when families are able to access hospital, paediatric hospice…

Toward optimal end-of-life care for patients with advanced chronic obstructive pulmonary disease: insights from a multicentre study

BACKGROUND: Understanding patients' needs and perspectives is fundamental to improving end-of-life (EOL) care. However, little is known of what quality care means to patients who have advanced lung disease. OBJECTIVES: To describe ratings of…

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…

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