Browse Items · Pediatric Palliative Care Library

Ethical Dilemmas In Postnatal Treatment Of Severe Congenital Hydrocephalus.

Severe congenital hydrocephalus manifests as accumulation of a large amount of excess fluid in the brain. It is a paradigmatic example of a condition in which diagnosis is relatively straightforward and long-term survival is usually associated with…

Limiting And Withdrawing Life Support In The Picu: For Whom Are These Options Discussed?

Most deaths in U.S. PICUs occur after a decision has been made to limitation or withdrawal of life support. The objective of this study was to describe the clinical characteristics and outcomes of children whose families discussed limitation or…

End-of-life Decision-making For Children With Severe Developmental Disabilities: The Parental Perspective.

BACKGROUND AND AIMS:
The objectives of this integrative review were to understand how parents of children with severe developmental disorders experience their involvement in end-of-life decision-making, how they prefer to be involved and what factors…

How Parents And Physicians Experience End-of-life Decision-making For Children With Profound Intellectual And Multiple Disabilities.

BACKGROUND:
End-of-life decisions (EoLD) often concern children with profound intellectual and multiple disabilities (PIMD). Yet, little is known about how parents and physicians discuss and make these decisions.
AIMS:
The objective of this research…

Limiting And Withdrawing Life Support In The Picu: For Whom Are These Options Discussed?

OBJECTIVES: Most deaths in U.S. PICUs occur after a decision has been made to limitation or withdrawal of life support. The objective of this study was to describe the clinical characteristics and outcomes of children whose families discussed…

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…

Pediatric Ethics and Communication Excellence (PEACE) Rounds: Decreasing Moral Distress and Patient Length of Stay in the PICU

This paper describes a practice innovation: the addition of formal weekly discussions of patients with prolonged PICU stay to reduce healthcare providers' moral distress and decrease length of stay for patients with life-threatening illnesses. We…

Advance care planning in adolescents with cystic fibrosis: A quality improvement project

INTRODUCTION: Advance care planning (ACP), though recommended, has not been studied in adolescents with cystic fibrosis (CF). This quality improvement project engaged adolescents with advanced CF disease in ACP and assessed patient and CF provider…

Impact of research participation on parents of seriously ill children.

BACKGROUND: There is a paucity of research evidence to guide health care providers' practice in pediatric palliative care. At the same time, some clinicians and Institutional Review Boards are reluctant to approve such studies because of concerns…

Increased beta-endorphin levels and generalized decreased pain thresholds in patients with limited jaw opening and movement-evoked pain from the temporomandibular joint

Usefulness of consecutive biomarkers measurement in the management of community-acquired pneumonia.

The aim of this study was to investigate whether procalcitonin (PCT), neopterin,

Palliative medicine consultation for preparedness planning in patients receiving left ventricular assist devices as destination therapy.

OBJECTIVE: To assess the benefit of proactive palliative medicine consultation for delineation of goals of care and quality-of-life preferences before implantation of left ventricular assist devices as destination therapy (DT)., PATIENTS AND METHODS:…

The Spanish version of the dementia quality of life questionnaire: a validation study

BACKGROUND: The aim of the study was to adapt and validate culturally the dementia-specific health-related quality of life instrument (HRQoL) into Spanish for patients with mild to moderate dementia. METHODS: Two forward translations, a reconciled…

Prognosis for survival and improvement in function in children with severe developmental disabilities

OBJECTIVE: To derive prognostic data for survival and clinical improvement in children with severe developmental disabilities. STUDY DESIGN: A 13-year follow-up study of several cohorts of children initially evaluated before their first birthday. The…

Identifying futility in a paediatric critical care setting: a prospective observational study

AIMS: To determine the extent of futile care provided to critically ill children admitted to a paediatric intensive care setting. METHODS: Prospective evaluation of consecutive admissions to a 20 bedded multidisciplinary paediatric intensive care…

Influence of epilepsy on mortality in mental retardation: an epidemiologic study

PURPOSE: A cohort consisting of all persons with known mental retardation (MR) and living in a Swedish province on December 31, 1985, was followed for 7 years (1987-1992) to study the mortality pattern. METHODS: A file of the cohort was linked to the…

Long-stay patients in the pediatric intensive care unit

OBJECTIVE: Length of stay in the pediatric intensive care unit (PICU) is a reflection of patient severity of illness and health status, as well as PICU quality and performance. We determined the clinical profiles and relative resource use of…

Relationship of illness severity and length of stay to functional outcomes in the pediatric intensive care unit: a multi-institutional study

OBJECTIVE: The purpose of this study was to establish relationships between illness severity, length of stay, and functional outcomes in the pediatric intensive care unit (PICU) by using multi-institutional data. We hypothesized that a positive…

Differences in pediatric ICU mortality risk over time

OBJECTIVES: To compare pediatric intensive care unit (ICU) mortality risk using models from two distinct time periods; and to discuss the implications of changing mortality risk for severity systems and quality-of-care assessment. DATA SOURCES AND…

Objective assessment of changing mortality risks in pediatric intensive care unit patients.

OBJECTIVE: To develop and validate a mortality risk predictor based on physiologic data that estimates daily the probability of a patient dying within the next 24 hrs as that probability changes with disease and recovery. SETTING: Nine pediatric ICUs…

Factors influencing family participation in a longitudinal study: comparison of pediatric and healthy samples.

Compared participation levels in a longitudinal study of parent-child relationships from infancy to 4 years in families of children with cystic fibrosis, congenital heart disease, and with no chronic illness. Demographic (parent's age, education) and…

A community survey of children with severe intellectual disability and their families: psychological adjustment, carer distress and the effect of respite care

The present paper describes a cross-sectional study of the psychosocial adjustment of 143 children with severe disability and their families identified from a regional case register for children with special needs. Thirty-eight per cent of the…

Prevalence and severity of feeding and nutritional problems in children with neurological impairment: Oxford Feeding Study

The aim of this study was to estimate the prevalence and severity of feeding and nutritional problems in children with neurological impairment within a defined geographical area. In a cross-sectional study, a validated questionnaire was sent to 377…

The Memorial Symptom Assessment Scale: an instrument for the evaluation of symptom prevalence, characteristics and distress

The Memorial Symptom Assessment Scale (MSAS) is a new patient-rated instrument that was developed to provide multidimensional information about a diverse group of common symptoms. This study evaluated the reliability and validity of the MSAS in the…

Comparison of continuous subcutaneous and intravenous hydromorphone infusions for management of cancer pain

To compare the safety and efficacy of subcutaneous and intravenous infusion of opioid analgesics, a randomised, double-blind, crossover trial was carried out in inpatients. 15 patients with severe cancer pain received two 48 h infusions of…

A report of four cases of acute, severe pulmonary hemorrhage in infancy and support with extracorporeal membrane oxygenation

Introduction
Pulmonary hemorrhage is an uncommon event in infants. It has been described most commonly in the sick premature neonate, older child, or adolescent with chronic cardiopulmonary disease. Acute idiopathic pulmonary hemorrhage in…

Tags: 1994, Acute Disease, Artificial, Backlog, Extracorporeal Membrane Oxygenation, Female, Hemorrhage/complications/therapy, Humans, Infant, Journal Article, Lung Diseases/complications/therapy, Male, Moler FW, Pediatric Pulmonology, Respiration, Respiratory Insufficiency/etiology/therapy, Sanders GM, Severity Of Illness Index, Siden HB

Advice seeking and appropriate use of a pediatric emergency department

OBJECTIVES: To determine whether seeking advice prior to an unscheduled visit to a pediatric emergency department (PED) influences appropriate use of this setting for minor illnesses. DESIGN: Cross-sectional questionnaire survey. SETTING: The medical…

Warfarin for atrial fibrillation. The patient's perspective

OBJECTIVE: To determine the minimal clinically important difference (MCID) of warfarin therapy for the treatment of nonvalvular atrial fibrillation from the perspective of patients using 2 different elicitation methods. DESIGN: All patients completed…

Assessing the clinical importance of symptomatic improvements. An illustration in rheumatology

OBJECTIVE: To estimate when a difference in disability symptoms is sufficiently large to be important to individual patients. DESIGN: Cross-sectional analysis of two groups: derivation set (n = 46) and validation set (n = 57). SETTING: The Arthritis…

Pediatric risk of mortality (PRISM) score

The Pediatric Risk of Mortality (PRISM) score was developed from the Physiologic Stability Index (PSI) to reduce the number of physiologic variables required for pediatric ICU (PICU) mortality risk assessment and to obtain an objective weighting of…

Tags: 1988, Backlog, Child, Critical Care Medicine, Getson PR, Humans, Infant, Infant Mortality, Intensive Care Units, Journal Article, Mortality, Multicenter Studies as Topic, Pediatric, Pollack MM, Preschool, Risk Factors, ROC Curve, Ruttimann UE, Severity Of Illness Index

The development and evaluation of the pain indicator for communicatively impaired children (PICIC)

A previous study found that parents of communicatively impaired children with severe cognitive impairments identified six core cues as indicating definite or severe pain in their child (J. Pediatr. Psychol. 27 (2002) 209). The frequency of each cue…

Classification and definition of disorders causing hypertonia in childhood

OBJECTIVE: This report describes the consensus outcome of an interdisciplinary workshop that was held at the National Institutes of Health in April 2001. The purpose of the workshop and this article are to define the terms "spasticity," "dystonia,"…

Pain in children with cerebral palsy: a review.

Children with cerebral palsy (CP) face many challenges including impaired motor control and coordination, functional impairment, sensory disturbances, and, sometimes, communication difficulties and cognitive deficits. Pain also may be a problem for…

Driscoll Children's Hospital respiratory syncytial virus database: risk factors, treatment and hospital course in 3308 infants and young children, 1991 to 2002

BACKGROUND: Treatment of respiratory syncytial virus (RSV) lower respiratory tract infection has historically been one of the most frequent reasons for admission to Driscoll Children's Hospital. OBJECTIVE: The objective of this study was to examine…

Clinician predictions of intensive care unit mortality

OBJECTIVE: Predicting outcomes for critically ill patients is an important aspect of discussions with families in the intensive care unit. Our objective was to evaluate clinical intensive care unit survival predictions and their consequences for…

Modern approach to children with osteogenesis imperfecta

Osteogenesis Imperfecta (OI) is characterized by bone fragility. At least seven discrete types have been described ranging from mild disease to a lethal form. In a large number of cases, mutations in one of the two genes encoding type I collagen have…

Acute and chronic paediatric intensive care patients: current trends and perspectives on resource utilization

BACKGROUND: Advances in paediatric critical care have resulted in increased survival of critically ill patients, many of whom require long-term ventilation as a means of life support. AIM: To determine current trends in resource utilization, and…

Duration and morbidity of newly diagnosed idiopathic thrombocytopenic purpura in children: A prospective Nordic study of an unselected cohort

OBJECTIVE: To determine the duration of the risk period with platelet counts 1 month and 25 had 30 events. Among 93 patients with chronic ITP, 73 were at risk >1 month and 44 had 111 events. Events occurred with an average frequency of 0.39 per month…

Pain, anxiety, distress, and suffering: interrelated, but not interchangeable

Neurological presentation in pediatric patients with congenital disorders of glycosylation type Ia

OBJECTIVE: Congenital disorders of glycosylation (CDG), formerly called carbohydrate-deficient glycoprotein syndromes, constitute a newly identified group of multisystem disorders characterized by defective glycosylation of N-glycosylated proteins.…

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