Browse Items · Pediatric Palliative Care Library

A clinical rating scale for Batten disease Reliable and relevant for clinical trials

2005

Tags: 2005, Adams H, Adolescent, Adult, Backlog, Child, Children W/SNI, Clinical Trials/standards, de Blieck EA, DeYoung J, Disease Progression, Dure L, Female, Humans, Journal Article, Levy Erika, Longitudinal Studies, Male, Marshall FJ, McDonough T, Messing S, Mink JW, Neurologic Examination/methods/standards, Neurology, Neuronal Ceroid-Lipofuscinoses/diagnosis/physiopathology/psychology, Neuropsychological Tests/standards, others, Personality Tests/standards, Predictive Value of Tests, Preschool, Prognosis, Rothberg PG, Severity Of Illness Index, Treatment Outcome

A cohort study of children and young people with progressive neuromuscular disorders: clinical and demographic profiles and changing patterns of referral for palliative care

BACKGROUND: Progressive neuromuscular disease in children is life limiting and these children and young people would benefit from palliative care services, but data are limited on the number and demography of these children. AIM: To describe the…

A comparative longitudinal study of gastrostomy devices in children

Long-term gastrostomy is a predictable intervention to ameliorate the effects of feeding and swallowing difficulties among children with severe spastic cerebral palsy. The evidence evaluating the efficacy and implications of the available gastrostomy…

A descriptive study of children dying in the pediatric intensive care unit after withdrawal of life-sustaining treatment

OBJECTIVE: To examine physiologic and therapeutic changes following withdrawal of life-sustaining treatment in children. DESIGN: Retrospective chart review. SETTING: University-affiliated tertiary care pediatric hospital. PATIENTS: All patients who…

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…

A meta-analysis of interventions for bereaved children and adolescents

The main objective of this review was to provide a quantitative and methodologically sound evaluation of existing treatments for bereavement and grief reactions in children and adolescents. Two meta-analyses were conducted: 1 on controlled studies…

A prospective evaluation of opioid weaning in opioid-dependent pediatric critical care patients

Critically ill children are treated with opioid medication in an attempt to decrease stress and alleviate pain during prolonged pediatric intensive care. This treatment plan places children at risk for opioid dependency. Once dependent, children need…

A prospective investigation into the epidemiology of in-hospital pediatric cardiopulmonary resuscitation using the international Utstein reporting style

OBJECTIVE: Data regarding pediatric in-hospital cardiopulmonary resuscitation (CPR) have been limited because of retrospective study designs, small sample sizes, and inconsistent definitions of cardiac arrest and CPR. The purpose of this study was to…

A qualitative study of health care professionals’ views and experiences of paediatric advance care planning

Background Good end-of-life care planning is vital to ensure optimal care is provided for patients and their families. Two key factors are open and honest advance care planning conversations between the patient (where possible), family, and health…

A revision of the intensity of treatment rating scale: classifying the intensity of pediatric cancer treatment

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,…

A typology of fatigue in children with cancer

Fatigue in adults with cancer has received considerable attention as a troublesome symptom that requires nursing intervention. Fatigue in children with cancer, however, has received considerably less focus. The first phase of the present study used…

ABC of palliative care. Special problems of children

1998

Tags: 1998, Backlog, Bereavement, Bmj (clinical Research Ed.), Child, Child Health Services, Child welfare, Family Health, Goldman A, Great Britain, Humans, Journal Article, Pain Measurement, Pain/etiology, Palliative Care, Preschool, Social Support

Aberrant sleep patterns in children with the Rett syndrome

Previous studies on the characteristics of disturbed sleep/wake patterns in children with the Rett syndrome have yielded inconsistent findings. In the current study, momentary time sampling procedures were used to measure the sleep/wake patterns of…

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…

Acute pain relief after Mantram meditation in children with neuroblastoma undergoing anti-GD2 monoclonal antibody therapy

Nonpharmacologic, mind-body interventions are used to reduce anxiety in pediatric patients. Anti-ganglioside GD2 monoclonal antibody (anti-GD2 MoAb 3F8) therapy is the standard of care for high-risk neuroblastoma and pain is its major side effect. We…

Adaptational process of parents of pediatric oncology patients

This study, based on grounded theory, explores the adaptational process of parents of pediatric oncology patients. Thirty-two Taiwanese parents (26 mothers and 6 fathers) were interviewed. Data were collected through individual in-depth and focus…

Advanced care planning in children with life-limiting conditions – the Wishes Document

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…

Age-dependent change in behavioral feature in Rubinstein-Taybi syndrome

Rubinstein-Taybi syndrome (RTS) is characterized by developmental delay, postnatal growth retardation, typical facial appearance, and broad thumbs and big toes. The behavioral phenotype of children with RTS has been described as friendly and having…

An evaluation of the Faces Pain Scale with young children

The psychometric characteristics of the Faces Pain Scale (FPS) were evaluated in three groups of preschool and school-aged children (3. 5-4.5; 4.5-5.5 and 5.5-6.5 years, respectively). The FPS was adequately comprehended by even young children. It…

Tags: 2000, Backlog, Cassey J, Child, Facial Expression, Female, Hennessy R, Humans, Hunter M, Journal Article, Journal of Pain and Symptom Management, Male, McDowell L, Non-U.S. Gov't, Pain Measurement/methods/psychology, Preschool, Reproducibility of Results, Research Support

An Objective Approach to Decisions to Withdraw or Withhold Life-sustaining Medical Treatment

Courts in England and Wales, Australia, and New Zealand have insisted the question of when it is acceptable to withdraw or withhold life-sustaining medical treatment from a child must be considered on a case-by-case basis. Over the last 40 years a…

Tags: 2019, Australia, best interests, Cameron J, Child, Decision Making, England, Futility, Humans, January 2020 List, Journal of law and medicine, life-sustaining treatment, New Zealand, parens patriae, Preschool, Savulescu J, Wales, Withdrawing Treatment, Withholding Treatment

An unusual clinical and biochemical presentation of ornithine transcarbamylase deficiency in a male patient

We report a male patient with a history of recurrent idiopathic vomiting, normal plasma ammonia and glutamine concentrations in acute phase, who died at 3 years of age. Ornithine transcarbamylase deficiency was diagnosed after detecting elevated…

Analysis of the circumstances at the end of life in children with cancer: Symptoms, suffering and acceptance

AbstractBackground: In an effort to improve the quality of life of children with cancer, this study analyzes the signs and symptoms at the end of life in such children. It is hoped that these data will contribute to the development of appropriate…

Annual summary of vital statistics: 2008

The number of births in the United States decreased between 2007 and 2008 (preliminary estimate: 4 251 095). Birth rates declined among all women aged 15 to 39 years; the decrease among teenagers reverses the increases seen in the previous 2 years.…

Anxiety and depression in parents 4-9 years after the loss of a child owing to a malignancy: a population-based follow-up.

BACKGROUND: Some consider the loss of a child as the most stressful life event. When the death is caused by a malignancy, the parents are commonly exposed not only to their own loss, but also to the protracted physical and emotional suffering of the…

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…

Are one or two dangerous? Opioid exposure in toddlers

Ingestions of opioid analgesics by children may lead to significant toxicity as a result of depression of the respiratory and central nervous systems. A review of the medical literature was performed to determine whether low doses of opioids are…

Aromatic L-amino acid decarboxylase deficiency: overview of clinical features and outcomes

In this paper, we provide a brief update of diagnostic considerations and biochemical phenotype in L-amino acid decarboxylase deficiency. We review clinical features and outcome data in 11 affected patients, including 7 previously unreported cases.…

Assessing mothers' attitudes about the physician's role in child health promotion

OBJECTIVE: This study assessed maternal attitudes about the physician's role in child health promotion. METHODS: Home interviews were conducted with 200 Massachusetts mothers (with one child age 2 to 3 years) enrolled in a health maintenance…

Assessing the impact of pediatric epilepsy and concomitant behavioral, cognitive, and physical/neurologic disability: Impact of Childhood Neurologic Disability Scale

Epilepsy has a significant impact on a child's life, the extent to which is based on four factors: epilepsy, cognition, behavioral, and physical/neurologic function. This study evaluates the ability of the 44-item Impact of Childhood Neurologic…

Assessment of need for a children's hospice program

Canuck Place, North America's first free-standing pediatric hospice of its kind, opened in 1995 in British Columbia, Canada. The province-wide program encompasses a broad spectrum of services intended to support community-based care and provide…

Tags: 1996, Adolescent, Backlog, Canada, Child, Child Health Services, Davies B, Death, Death studies, Grief, Health Services Needs And Demand, Hospice Care, Humans, Journal Article, PPC Book Chapter 2011 (Kim Widger), Preschool, Program Development

Assessment of nurses' judgement for analgesic requirements of postoperative children

Over the last 5-10 years, there has been significant growth in the knowledge and strategies of pain management in children. Investigations are required to discern whether concomitant improvements in clinical practice have occurred. The purpose of…

Tags: 1996, Acetaminophen/administration & dosage/therapeutic use, Analgesics, Backlog, Child, Female, Humans, Journal Article, Journal Of Clinical Pharmacy And Therapeutics, Male, Non-Narcotic/administration & dosage/therapeutic use, Nursing Assessment, Pain, Postoperative/drug therapy/psychology, Preschool, Romsing J, Suppositories, Tonsillectomy

Assessment of sleep in children with mucopolysaccharidosis type III

Sleep disturbances are prevalent in mucopolysaccharidosis Type III (MPS III), yet there is a lack of objective, ecologically valid evidence detailing sleep quantity, quality or circadian system. Eight children with MPS III and eight age-matched…

Assessment of the need for palliative care for children in South Africa

UNICEF and the International Children's Palliative Care Network undertook a joint analysis in three sub-Saharan countries-Zimbabwe, South Africa, and Kenya-to estimate the palliative care need among their children and to explore these countries'…

Association between religious and socio-economic background of parents of children with solid tumors and DNR orders

BACKGROUND: The influence of socio-economic and religious background on decisions made by parents of children with incurable cancer regarding DNR orders is not fully understood. PROCEDURE: A retrospective analysis of medical charts of patients who…

Autopsies in children continue to reveal unanticipated discrepancies between autopsy findings and antemortem clinical diagnoses

2009

Tags: 2009, Archives of Disease in Childhood, Autopsy/standards/statistics & numerical data, Backlog, Baines P, Child, Diagnosis, Epidemiologic Methods, Female, Humans, Infant, Intensive Care Units, Journal Article, Male, Narayanan A, Pediatric/statistics & Numerical Data, Preschool, Thorburn K

Tags: 2003, Adaptation, Adolescent, Adolescent Transitions, Backlog, Child, Child Behavior Disorders/etiology/psychology/therapy, Chronic Disease/psychology/therapy, Goldsmith T, Humans, Journal Article, LeBlanc LA, Patel DR, Pediatric Clinics of North America, Preschool, Psychological

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