Browse Items · Pediatric Palliative Care Library

Follow-up on seven adult patients with mild Sanfilippo B-disease.

This report describes 7 patients, aged 30 to 43 years, suffering from a mild variant of Sanfilippo B-disease. Somatic findings in these patients are unremarkable. Dementia and behavioral disturbances occurred late in the course of the disease. All 7…

Tags: 1987, Adult, Age Factors, American Journal Of Medical Genetics, Backlog, Dementia/complications/genetics, Female, Follow-up Studies, Humans, Journal Article, Longitudinal Studies, Male, Mental Retardation/complications/genetics, Mucopolysaccharidoses/genetics, Mucopolysaccharidosis III/genetics, Pedigree, van de Kamp JJ, van Schrojenstein-de Valk HM

Emotionally focused interventions for couples with chronically ill children: a 2-year follow-up

Couples with chronically ill children are particularly at risk for experiencing marital distress. The study presented here is a 2-year follow-up of a randomized control trial that assessed the efficacy of Emotionally Focused Therapy (EFT) in…

Joubert syndrome: long-term follow-up

Polyethylene glycol without electrolytes for children with constipation and encopresis

BACKGROUND: Children with functional constipation and encopresis benefit from behavior modification and from long-term laxative medication. Polyethylene glycol without electrolytes has become the first option for many pediatric gastroenterologists.…

Parental stress and burden following traumatic brain injury amongst children and adolescents.

PRIMARY OBJECTIVES: To assess parental stress following paediatric traumatic brain injury (TBI), and examine the relationship between self-reported problems, parental stress and general health. RESEARCH DESIGN: Parents of 97 children admitted with a…

A prospective comparative study of 2540 infants and children with newly diagnosed idiopathic thrombocytopenic purpura (ITP) from the Intercontinental Childhood ITP Study Group

OBJECTIVE: To analyze prospectively the impact of age at diagnosis in childhood idiopathic thrombocytopenic purpura (ITP). STUDY DESIGN: International registry from June 1997 to May 2001, with analysis of data from baseline and 6-month-follow-up…

Use of bisphosphonate therapy for osteoporosis in childhood and adolescence

Congenital and acquired forms of osteoporosis in childhood and adolescence can result in morbidity from fracture and pain in childhood, and place an individual at significant risk for problems in adult life. A range of therapies exist for the…

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…

Unilateral closed-lip schizencephaly and epilepsy: a comparison with cases of unilateral polymicrogyria

We compared the electroclinical features and evolution of patients with two different types of abnormal cortical organization: unilateral closed-lip schizencephaly (SCHZ) and unilateral polymicrogyria (PMG). Between February 1990 and June 2002, 51…

Bereaved parents' experience of research participation.

Despite the ethical codes guiding bereavement research, few studies have been conducted to evaluate the perceived stress experienced by the bereaved, and to explore which methodologies cause least distress. This article investigates how bereaved and…

Mortality in parents after death of a child in Denmark: A nationwide follow-up study.

BACKGROUND: Little is known about the effect of parental bereavement on physical health. We investigated whether the death of a child increased mortality in parents. METHODS: We undertook a follow-up study based on national registers. From 1980 to…

Short-term safety assessment in the use of intravenous zoledronic acid in children

The clinical side effects of the potent new bisphosphonate zoledronic acid in children are unknown. In this study of 34 children with various bone disorders, the frequency of postinfusion flu-like illness, hypocalcemia, and hypophosphatemia was 85%,…

Long-term follow-up, neurological outcome and survival rate in 28 Nordic patients with glutaric aciduria type 1

All 28 patients, 13 females and 15 males, with glutaric aciduria type 1 diagnosed between 1975 and 2001 in Denmark, Finland, Norway and Sweden were identified and studied retrospectively until 2001. Mass screening was not performed. Three were…

Peroxisome biogenesis disorders with prolonged survival: phenotypic expression in a cohort of 31 patients

The peroxisome biogenesis disorders (PBDs) with generalized peroxisomal dysfunction include Zellweger syndrome (ZS), neonatal adrenoleukodystrophy (NALD), and infantile Refsum disease (IRD). There is clinical, biochemical, and genetic overlap among…

Modulation of cortical-limbic pathways in major depression: treatment-specific effects of cognitive behavior therapy

BACKGROUND: Functional imaging studies of major depressive disorder demonstrate response-specific regional changes following various modes of antidepressant treatment. OBJECTIVE: To examine changes associated with cognitive behavior therapy (CBT).…

Tags: 2004, Adult, Ambulatory Care, Antidepressive Agents, Archives Of General Psychiatry, Backlog, Bieling P, Blood Glucose/metabolism, Brain Mapping, Cerebral Cortex/physiopathology/radionuclide imaging, Cognitive Therapy, Comparative Study, Depressive Disorder, Emission-Computed, Energy Metabolism/physiology, Female, Fluorodeoxyglucose F18/diagnostic use, Follow-up Studies, Frontal Lobe/physiopathology/radionuclide imaging, Garson C, Goldapple K, Humans, Journal Article, Kennedy S, Lau M, Limbic System/physiopathology/radionuclide imaging, Major/physiopathology/radionuclide imaging/therapy, Male, Mayberg H, Middle Aged, Nerve Net/physiopathology/radionuclide imaging, Neural Pathways/physiopathology/radionuclide imaging, Non-U.S. Gov't, Outcome And Process Assessment (health Care), Paroxetine/therapeutic use, Personality Inventory, Prefrontal Cortex/physiopathology/radionuclide imaging, Research Support, Second-Generation/therapeutic use, Segal Z, Sensitivity and Specificity, Tomography

Surviving cancer in childhood can mean lifelong health issues

2006

Tags: 2006, Adolescent, Adult, Backlog, Cataract/etiology, Child, Follow-up Studies, Graft vs Host Disease, Health Status, Hearing Loss/etiology, Hematopoietic Stem Cell Transplantation/adverse effects, Humans, Journal Article, Lancet Oncology, Pain/etiology, PedPal Lit, Senior K, Survivors, Vision Disorders/etiology

The use of conscious sedation for pain control during forearm fracture reduction in children: does race matter?

Recent reports in the medical literature indicate that certain racial disparities have been identified in healthcare. The authors sought to identify the potential relationship between the use of pain medications in African-American and Caucasian…

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…

The impact on health-related quality of life from non-steroidal anti-inflammatory drugs, methotrexate, or steroids in treatment for juvenile idiopathic arthritis

OBJECTIVE: To assess and compare the impact of medication treatments on health-related quality of life (HRQOL), family function, and medical status in children with juvenile idiopathic arthritis (JIA). METHODS: Fifty-seven children diagnosed with JIA…

Long-term follow-up of neonatal mitochondrial cytopathies: a study of 57 patients

OBJECTIVES: We sought to determine the long-term clinical and biochemical outcome of newborns with mitochondrial cytopathies (MCs) and to identify possible prognostic factors that may modify the course of these diseases. MATERIAL AND METHODS:…

Bereavement care for families part 2: Evaluation of a paediatric follow-up programme

In North America, parents are not expected to outlive their child. When they do, neighbours, co-workers, friends and family do not know what to say or do resulting in parents feeling isolated in their grief and left alone to find the support they…

Tags: 2006, Backlog, Bereavement, Child, deJong-Berg MA, Family, Female, Follow-up Studies, Humans, International Journal of Palliative Nursing, Journal Article, Kane L, Male, Pediatrics, Program Evaluation

Course of disability and respiratory function in untreated late-onset Pompe disease

Fifty-two untreated patients with late-onset Pompe disease completed questionnaires about their clinical condition and level of handicap at baseline and at 1-year (n = 41) and 2-year follow-ups (n = 40). During this period, declines in functional…

Family focused grief therapy: a randomized, controlled trial in palliative care and bereavement

OBJECTIVE: The aim of family focused grief therapy is to reduce the morbid effects of grief among families at risk of poor psychosocial outcome. It commences during palliative care of terminally ill patients and continues into bereavement. The…

Psychological Distress and the Impact of Social Support on Fathers and Mothers of Pediatric Cancer Patients: Long-Term Prospective Results

Brief report: family-based group intervention for young siblings of children with chronic illness and developmental disability

OBJECTIVE: To evaluate the impact of a family-based group intervention for young siblings of children with chronic illness and developmental disability (CI/DD). METHODS: Forty-three healthy siblings (ages 4-7 years) of children with CI/DD and their…

The spectrum of adult congenital heart disease in Europe: morbidity and mortality in a 5 year follow-up period. The Euro Heart Survey on adult congenital heart disease

AIMS: To describe clinical and demographic characteristics at baseline of a European cohort of adults with congenital heart disease (CHD) and to assess mortality and morbidity in a 5 year follow-up period. METHODS AND RESULTS: Data collected as part…

Hospitalization for mental illness among parents after the death of a child.

BACKGROUND: The loss of a child is considered one of the most stressful events in the life of a parent. We hypothesized that parental bereavement increases the risk of hospital admission for a psychiatric disorder, especially for affective disorders.…

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…

Safety and efficacy of rosuvastatin therapy for the prevention of hyperlipidemia in adult cardiac transplant recipients

BACKGROUND: Hyperlipidemia after orthotopic heart transplantation (OHT) is associated with immunosuppression. Many OHT patients have increased lipid levels above published guidelines despite treatment with high doses of statins. Treatment with…

Neurologically impaired children and digestive problems

Transdermal fentanyl in the management of children with chronic severe pain: results from an international study

BACKGROUND: The current study was conducted to assess the safety and tolerability of a transdermal fentanyl delivery system for the relief of chronic pain in a pediatric population, and also to validate titration recommendations and conversion to…

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

Handgrip strength and mortality in the oldest old population: the Leiden 85-plus study

BACKGROUND: Poor muscular strength has been shown to be associated with increased morbidity and mortality in diverse samples of middle-aged and elderly people. However, the oldest old population (i.e., over 85 years) is underrepresented in such…

Information exchange among physicians caring for the same patient in the community

BACKGROUND: The exchange of information is an integral component of continuity of health care and may limit or prevent costly duplication of tests and treatments. This study determined the probability that patient information from previous visits…

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…

Ocular characteristics in 10 children with long-chain 3-hydroxyacyl-CoA dehydrogenase deficiency: a cross-sectional study with long-term follow-up

PURPOSE: To present long-term ocular complications and electroretinographic (ERG) findings in children with long-chain 3-hydroxyacyl-CoA dehydrogenase (LCHAD) deficiency - a life-threatening metabolic disease - and the relation to age at diagnosis,…

End-of-life practices in the Netherlands under the Euthanasia Act

BACKGROUND: In 2002, an act regulating the ending of life by a physician at the request of a patient with unbearable suffering came into effect in the Netherlands. In 2005, we performed a follow-up study of euthanasia, physician-assisted suicide, and…

Long-term effects of the death of a child on parents' adjustment in midlife

The death of a child is a traumatic event that can have long-term effects on the lives of parents. This study examined bereaved parents of deceased children (infancy to age 34) and comparison parents with similar backgrounds (n = 428 per group)…

Long term posttraumatic growth after breast cancer: prevalence, predictors and relationships with psychological health

This study evaluated the prevalence and predictors of long term posttraumatic growth (PTG) after breast cancer, and relationships of PTG with psychological health in a random sample of 307 currently disease-free women 5-15 years after diagnosis. This…

Psychological health in siblings who lost a brother or sister to cancer 2 to 9 years earlier: Psychological health in siblings who lost a brother or sister to cancer

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