Browse Items · Pediatric Palliative Care Library

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…

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…

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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…

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…

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…

Perceptions of control and long-term recovery from rape

The relationship between perceptions of control and symptoms of both long-term depression and post-traumatic stress was examined. Enduring beliefs of personal competence and control were found to be associated with lower rates of depression and…

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…

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

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…

Consultation of Parents in Actual End-Of-Life Decision-Making in Neonates and Infants

The objective of this study was to assess how frequently end-of-life decisions (ELDs) with a possible or certain life-shortening effect in neonates and infants were discussed with parents, and to determine if consultation of parents was associated…

Exposure to home-based pediatric palliative and hospice care and its impact on hospital and emergency care charges at a single institution

BACKGROUND: Pediatric palliative care (PPC) aims to promote quality of life for children and their families through prevention and relief of physical and psychosocial symptoms. Little is known about how PPC/hospice services impact health care…

Integrating oncology and palliative home care in Italy: the experience of the "L'Aquila per la Vita" Home Care Unit

AIM: To evaluate the efficacy of a home care program, closely integrated with a medical oncology department. PATIENTS AND METHODS: The charts, prospectively recorded, of all the patients treated at home by the "L'Aquila per la Vita" Home Care Unit…

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…

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…

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…

A Comparative Cost-minimization Analysis Of Providing Paediatric Palliative Respite Care Before And After The Opening Of Services At A Paediatric Hospice

A palliative care service provider may add or decrease overall operational costs to the healthcare system. This study assessed the costs of managing respite care for children with life-limiting illness at the Children's Hospital of Eastern Ontario…

Characteristics of patients who refuse do-not-resuscitate orders upon admission to an acute palliative care unit in a comprehensive cancer center.

BACKGROUND: Refusal of appropriately indicated do-not-resuscitate (DNR) orders may cause harm and distress for patients, families, and the medical team. We conducted a retrospective study to determine the frequency and predictors of refusals of DNR…

Trends in the aggressiveness of end-of-life care for Korean pediatric cancer patients who died in 2007-2010

BACKGROUND: In light of the Korean Supreme Court's 2009 ruling favoring a patient's right to die with dignity, we evaluated trends in aggressive care in a cohort of pediatric cancer patients. Methods We conducted a population-based retrospective…

Tags: 2014, Backlog, Jo MinKyoung, Journal Article, Kang HJ, Kim Young A, Lee Eun S, Park JD, Pediatric Cancer, PLoS One, Retrospective Studies, Shin Hee Young, Yun Young H

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

The course of the terminal phase in patients with amyotrophic lateral sclerosis

The fear of "choking to death" is on the mind of most patients suffering from amyotrophic lateral sclerosis (ALS). So far, however, there have been no systematic surveys concerning the dying phase in a general ALS population. We therefore performed a…

Mechanical ventilation in Ontario, 1992-2000: incidence, survival, and hospital bed utilization of noncardiac surgery adult patients

OBJECTIVE: Mechanical ventilation is a common therapy used in caring for critically ill patients, but its epidemiology is poorly understood. We describe population-based, temporal trends in the incidence, survival, and hospital bed utilization of…

Unexpected Survivors: Children With Life-Limiting Conditions of Uncertain Prognosis

OBJECTIVE: Prognostication of survival is difficult in children with life-limiting illnesses because of the rarity of these conditions and technological advances improving survival. The objective of this article is to describe the characteristics of…

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…

Late onset Pompe disease: clinical and neurophysiological spectrum of 38 patients including long-term follow-up in 18 patients

To describe the clinical and neurophysiological spectrum and prognosis in a large cohort of biochemically and genetically proven late onset Pompe patients. Thirty-eight diagnosed with late onset Pompe disease at our neuromuscular department during…

Birth weight percentile and the risk of term perinatal death

OBJECTIVE: To estimate the association between birth weight percentile and the risk of perinatal death at term in relation to the cause of death. METHODS: We performed a retrospective cohort study of all term singleton births in delivery units in…

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…

The Relationship Between The Nursing Environment And Delivering Culturally Sensitive Perinatal Hospice Care

BACKGROUND: Wide variations exist among perinatal hospices, and barriers to perinatal palliative care exist at the healthcare level. Research in the area of culturally sensitive perinatal palliative care has been scarce, a gap which this study…

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.…

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…

Brachytherapy in children with rhabdomyosarcomas of the nasolabial fold

BACKGROUND: Rhabdomyosarcomas (RMS) of the nasolabial fold can be difficult to manage surgically due to functional and cosmetic limitations. Therefore, brachytherapy (BT) has been proposed to improve local control while limiting the volume of…

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,…

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…

Feeding jejunostomy in patients with neurologic disorders

A retrospective study of 54 patients who underwent feeding jejunostomy because of dysphagia on a neurologic basis was performed to determine risk factors affecting a postoperative mortality of 33% and six-month mortality of 67%. Advanced patient age,…

Outcome of children treated for relapsed acute myeloid leukemia in Central America

BACKGROUND: Relapsed childhood acute myeloid leukemia (AML) outcomes have not been documented in resource-limited settings. We examined survival after relapse for children with AML (non-APML) and acute promyelocytic leukemia (APML) in Central…

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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