Browse Items · Pediatric Palliative Care Library

Miglustat for treatment of Niemann-Pick C disease: a randomised controlled study

BACKGROUND: Niemann-Pick type C disease (NPC) is an inherited neurodegenerative disorder characterised by an intracellular lipid-trafficking defect with secondary accumulation of glycosphingolipids. Miglustat, a small iminosugar, reversibly inhibits…

Period prevalence of epilepsy in children in BC: a population-based study

BACKGROUND: Most estimates of the prevalence of seizure disorders in Canada derive from national surveys which differ in sampling and case-finding methods. This study used health care utilization data to make a population-based estimate of the…

Determinants of do-not-resuscitate orders in palliative home care.

OVERVIEW: Do-not-resuscitate (DNR) orders allow home care clients to communicate their own wishes over medical treatment decisions, helping to preserve their dignity and autonomy. To date, little is known about DNR orders in palliative home care.…

Prediction of pediatric death in the year after hospitalization: a population-level retrospective cohort study

BACKGROUND: The study of how the quality of pediatric end-of-life care varies across systems of health care delivery and financing is hampered by lack of methods to adjust for the probability of death in populations of ill children. OBJECTIVE: To…

Impact of writing "comfort measures only" orders in a community teaching hospital.

OBJECTIVES: We compared end-of-life care for patients with and without orders for "comfort measures only" (CMO) and evaluated whether standards for palliative medicine were met., DESIGN: We retrospectively reviewed the charts of 40 patients, 20 with…

Diagnostic evaluation using whole-body technetium bone scan in children with cerebral palsy and pain.

BACKGROUND: Pain in noncommunicative children can be difficult to localize and diagnose. The purpose of this study is to report our experience using a 3-phase whole-body technetium bone scan as a screening tool in identifying the source of persistent…

Lack of utility of abdominal x-rays in the evaluation of children with constipation: comparison of different scoring methods

BACKGROUND AND AIM: Abdominal x-rays are used diagnostically in the evaluation of children with constipation. However, their clinical utility has not been established. The aim of the study was to assess the accuracy of different methods in…

Transition process of patients with type 1 diabetes (T1DM) from paediatric to the adult health care service: a hospital-based approach

INTRODUCTION: The outcomes of different types of transitions of young people with chronic diseases have been poorly investigated. OBJECTIVE: To evaluate and compare a structured transition from the paediatric diabetes services (PDS) into the adult…

Withdrawal and limitation of life-sustaining treatments in a paediatric intensive care unit and review of the literature.

OBJECTIVES: To examine withdrawal and limitation of life-sustaining treatment (WLST) in an Australian paediatric intensive care unit (PICU) and to compare this experience with published data from other countries. DESIGN: Retrospective chart review…

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…

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…

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…

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…

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…

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]

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…

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

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…

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…

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…

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…

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…

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…

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.…

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]

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 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…

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 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…

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…

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…

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…

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…

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

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…

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…

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