Browse Items · Pediatric Palliative Care Library

Shifting place of death among children with complex chronic conditions in the United States, 1989-2003

CONTEXT: The place where children with complex chronic conditions are dying may be shifting toward residential homes due to the evolving epidemiology of life-threatening childhood conditions, advances in home-based medical technology, and changes in…

Anxiety is contagious-symptoms of anxiety in the terminally ill child affect long-term psychological well-being in bereaved parents

BACKGROUND: We studied the relation between unrelieved symptoms in terminally ill children and the psychological well-being in the bereaved parents 4-9 years after their loss. PROCEDURE: We contacted parents in Sweden who had lost a child to a…

The natural history of Niemann-Pick disease type C in the UK

Niemann-Pick disease type C (NPC) is an autosomal recessive, neurovisceral lipid storage disorder. Mutations in two genes (NPC1 and NPC2) produce indistinguishable clinical phenotypes by biochemical mechanisms that have not yet been entirely…

New treatment paradigms in neonatal metabolic epilepsies.

Neonatal seizures represent a major challenge among the epilepsies vis-a-vis seizure classification, electroclinical correlation, inherent excitability of neocortex, ontogenic characteristics of neurotransmitter receptors, and responsiveness to…

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…

Parents' perspectives regarding a physician-parent conference after their child's death in the pediatric intensive care unit

OBJECTIVE: To investigate parents' perspectives on the desirability, content, and conditions of a physician-parent conference after their child's death in the pediatric intensive care unit (PICU). STUDY DESIGN: Audio-recorded telephone interviews…

Categorizing neonatal deaths: a cross-cultural study in the United States, Canada, and The Netherlands.

OBJECTIVE: To clarify the process of end-of-life decision-making in culturally different neonatal intensive care units (NICUs). STUDY DESIGN: Review of medical files of newborns >22 weeks gestation who died in the delivery room (DR) or the NICU…

Withdrawal of mechanical ventilation in pediatric and neonatal intensive care units

Withdrawing life-sustaining technologies requires all of the resources and concepts that the field of palliative care has to offer. By learning some fundamental principles of medical management at the time of withdrawal and by mastering a few…

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…

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…

Hospital care for parents after perinatal death

OBJECTIVE: To systematically review parent experiences with hospital care after perinatal death. DATA SOURCES: An evaluation of more than 1,100 articles from 1966 to 2006 was performed to identify studies of fetal death in the second or third…

Parents' views of cancer-directed therapy for children with no realistic chance for cure

PURPOSE: Previous literature suggests that parents often wish to continue cancer-directed therapy for their children with incurable cancer. We assessed parents' experiences with treatment for their children with cancer and no realistic chance of…

Canadian cancer statistics at a glance: cancer in children

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

Scoring evaluation of the natural course of mucopolysaccharidosis type IIIA (Sanfilippo syndrome type A)

OBJECTIVE: Mucopolysaccharidosis types IIIA through IIID (Sanfilippo syndrome) are caused by deficiencies of enzymes involved in the degradation of heparan sulfate. The onset and severity of the disease are highly variable. The purpose of this study…

Pediatric cardiopulmonary resuscitation: advances in science, techniques, and outcomes

More than 25% of children survive to hospital discharge after in-hospital cardiac arrests, and 5% to 10% survive after out-of-hospital cardiac arrests. This review of pediatric cardiopulmonary resuscitation addresses the epidemiology of pediatric…

Clinical report--Forgoing medically provided nutrition and hydration in children

There is broad consensus that withholding or withdrawing medical interventions is morally permissible when requested by competent patients or, in the case of patients without decision-making capacity, when the interventions no longer confer a benefit…

The relationship between grief adjustment and continuing bonds for parents who have lost a child

This article presents findings from a study on the impact of a child's death on parents. We explored the prominence and adaptiveness of parents' continuing bonds expressions, psychological adjustment, and grief reactions. A qualitative case study…

The emerging issue of euthanasia

2005

Tags: 2005, Adolescent, Archives Of Pediatrics & Adolescent Medicine, Backlog, Child, Decision Making, Euthanasia, Humans, Infant, Journal Article, Longitudinal Studies, Netherlands, Newborn, Pediatrics/statistics & numerical data, Preschool, Siden HB, Terminal Care

The clinical and demographic characteristics of nonneuronopathic Gaucher disease in 887 children at diagnosis

OBJECTIVE: To describe the clinical and demographic characteristics of nonneuronopathic Gaucher disease (GD) in children at the time of diagnosis. DESIGN: Longitudinal observational database of the International Collaborative Gaucher Group Gaucher…

Clinical and MRI correlates of cerebral palsy: the European Cerebral Palsy Study

CONTEXT: Magnetic resonance imaging (MRI) findings have been reported for specific clinical cerebral palsy (CP) subgroups or lesion types but not in a large population of children with all CP subtypes. Further information about the causes of CP could…

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…

Neonatal management of trisomy 18: Clinical details of 24 patients receiving intensive treatment.

Management of neonates with trisomy 18 is controversial, supposedly due to the prognosis and the lack of precise clinical information concerning efficacy of treatment. To delineate the natural history of trisomy 18 managed under intensive treatment,…

Menkes' kinky hair syndrome

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…

A literature review on off-label drug use in children

The aim was to compare results of studies performed in different settings worldwide and identify common therapeutic areas to allow for focused interventions, because off-label drug use can be a measure of the lack of knowledge concerning paediatric…

Status quo of palliative care in pediatric oncology-a nationwide survey in Germany

Cancer is the leading cause of death among the pediatric population with life-limiting conditions. The provision of palliative care at home and on the children's cancer unit has not been surveyed previously on a national scale. A survey of 71 (of 73)…

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…

A scale to monitor progression and treatment of mitochondrial disease in children.

Mitochondrial diseases affect all age groups, but those with childhood onset often seem to experience the greatest burden of disability. In some paediatric patients this can be explained by a cumulative disability acquired over many years. In others,…

The Groningen protocol--euthanasia in severely ill newborns

2005

Tags: 2005, Backlog, Death and Euthanasia, Euthanasia/ethics/legislation & jurisprudence, Humans, Infant, Intensive Care/ethics/legislation & jurisprudence, Journal Article, Netherlands, Newborn, Practice Guidelines, Prognosis, Sauer PJ, The New England Journal Of Medicine, Third-Party Consent/legislation & jurisprudence, Verhagen E

Pediatric advance care planning.

OBJECTIVE: This study describes the process and population involved in pediatric advance care planning at one Midwest medical center. The outcomes and the parents' perceptions of this planning are also discussed., METHODS: Pediatric patients with…

Tags: 2005, 7 died at home and 2 died at a hospital. Eight of the children's advance directives were followed during the dying process, 9 are deceased, Advance Care Planning/og [Organization & Administration], Advance Care Planning/organization & Administration, Backlog, Child, DNAR, DNAR Outcomes, Female, Hammes BJ, Humans, including preserving their child's quality of life and avoiding unnecessary suffering., individuals in the community raised concerns about the child's advance directive. CONCLUSIONS: Even though the topic of their child's death is difficult, Infant, Interviews As Topic, Journal Article, Journal of Palliative Medicine, Kempf M, Klevan J, Male, Newborn, Parents/psychology, Parents/px [psychology], Pediatrics, PedPal Lit, Preschool, the majority of the interviewed parents found the advance care planning process for the child helpful because it assured the best care for the child, while 1 was not. Th irteen parents were interviewed. Twelve stated that the process of advance care planning benefited their children and their family. Rarely, Williams MS, Wisconsin

Palliative care for infants, children, adolescents, and their families

Thinking outside the box: prenatal care and the call for a prenatal advance directive

Evidence for healing interventions with perinatal bereavement

The purpose of this article is to explore the concept of perinatal grief and evidence-based healing interventions for it. The loss of a pregnancy or death of an infant causes profound grief, yet society has long minimized or ignored this grief, which…

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…

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