Browse Items · Pediatric Palliative Care Library

Wilson's disease: a longitudinal study of psychiatric symptoms

One hundred and twenty-nine cases of Wilson's disease (WD) were assessed at index admission and two follow-ups (F1 and F2) on a range of clinical and biochemical variables. The commonest psychiatric symptoms throughout were incongruous behavior,…

Vulnerability and resilience to combat exposure: can stress have lifelong effects?

The purpose of this study was to examine whether appraisals of desirable and undesirable effects of military service mediated the effect of combat stress on posttraumatic stress disorder (PTSD) symptoms in later life in 1,287 male veterans, aged…

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…

Use of a clinical pathway to improve the acute management of vaso-occlusive crisis pain in pediatric sickle cell disease

BACKGROUND: The most common, debilitating morbidity of sickle cell disease (SCD) is vaso-occlusive crisis (VOC) pain. Although guidelines exist for its management, they are generally not well-followed, and research in other pediatric diseases has…

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…

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…

Therapeutic modification of membrane lipid abnormalities in juvenile neuronal ceroid-lipofuscinosis (Batten disease).

Five patients with juvenile neuronal ceroid-lipofuscinosis, who were shown to have absent or reduced serum prebetalipoprotein and a deficiency of polyunsaturated fatty acids in erythrocyte membrane lipids, were treated for a period of one year with…

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…

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…

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…

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…

The forgotten griever: a nationwide follow-up study of mortality subsequent to the death of a sibling

Previous findings have suggested that the loss of a family member is associated with mortality among bereaved family members. The least-studied familial relationship in the bereavement literature is that of siblings, although loss of a sibling may…

Tay-Sachs disease: Progression of changes on neuroimaging in four cases.

The neuroradiological findings in four patients with Tay-Sachs disease are described in three phases of the clinical course. The basal ganglia and cerebral white matter show low density on computed tomography and high signal intensity on T2-weighted…

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

Survival without disability to age 5 years after neonatal caffeine therapy for apnea of prematurity

CONTEXT: Very preterm infants are prone to apnea and have an increased risk of death or disability. Caffeine therapy for apnea of prematurity reduces the rates of cerebral palsy and cognitive delay at 18 months of age. OBJECTIVE: To determine whether…

Tags: 2012, Anderson PJ, Apnea/drug therapy, Asztalos EV, Backlog, Barrington KJ, Blindness/epidemiology/etiology/prevention & control, Caffeine/adverse effects/therapeutic use, Central Nervous System Stimulants/adverse effects/therapeutic use, Cerebral Palsy/epidemiology, Child, Child Development, Cognition Disorders/epidemiology/etiology/prevention & control, Davis PG, Deafness/epidemiology/etiology/prevention & control, Developmental Disabilities/epidemiology/etiology/prevention & control, Dewey D, Doyle LW, Female, Follow-up Studies, Grunau RE, Humans, Incidence, Infant, JAMA, Journal Article, Male, Moddemann D, N2N, Newborn, Odds Ratio, Ohlsson A, Premature, Preschool, Roberts RS, Schmidt B, Solimano A, Survival Analysis, Tin W, Treatment Outcome, Trial Investigators Caffeine for Apnea of Prematurity (CAP), Very Low Birth Weight

Structural equation modeling with longitudinal data: strategies for examining group differences and reciprocal relationships

This article describes the use of structural equation modeling with latent variables to examine group differences and test competing models about cause-effect relationships in passive longitudinal designs. This approach is compared with several other…

Status epilepticus in children: aetiology, treatment, and outcome

This retrospective study includes 65 children treated for status epilepticus at Tampere University Hospital in Finland. Aetiology of the condition, effectiveness of the treatment protocol, including short barbiturate anaesthesia to prevent prolonged…

Tags: 1997, Adolescence, Age Distribution, Anesthetics, Anticonvulsants, Backlog, Barbiturates/ad [Administration & Dosage], Chi-Square Distribution, Child, Developmental Medicine & Child Neurology, Diazepam/ad [Administration & Dosage], Drug Administration Schedule, Electroencephalography, Encephalitis/co [Complications], Eriksson KJ, Female, Follow-up Studies, Human, Infant, Intravenous/ad [Administration & Dosage], Journal Article, Koivikko MJ, Male, Meningitis, Nervous System Diseases/ep [Epidemiology], Neuropsychological Tests, Non-U.S. Gov't, Preschool, Prevalence, Retrospective Studies, Risk Factors, Septic/co [Complications], Sex Distribution, Shock, Status Epilepticus/di [Diagnosis], Status Epilepticus/dt [Drug Therapy], Status Epilepticus/ep [Epidemiology], Status Epilepticus/et [Etiology], Streptococcal Infections/co [Complications], Support, Time Factors, Treatment Outcome, Viral/co [Complications]

Spiritual aspects of loss among partners of men with AIDS: postbereavement follow-up

This article is a follow-up study of bereaved caregiving male partners of men with AIDS (T.A. Richards & S. Folkman, 1997). The earlier study examined spiritual beliefs, experiences, and practices reported in interviews with 125 caregivers conducted…

Sleep and neuromuscular disease: bilevel positive airway pressure by nasal mask as a treatment for sleep disordered breathing in patients with neuromuscular disease

OBJECTIVE: Investigation of the therapeutic effects of bilevel positive airway pressure delivered by nasal mask in patients with neuromuscular disease. METHODS: 20 patients with neuromuscular disease were evaluated for symptoms of nocturnal sleep…

Sick leave among parents of children with cancer - a national cohort study

BACKGROUND: Due to psychological distress and an increased care burden, parents of children diagnosed with cancer may face a higher risk of sickness absence from work. The objective of this study was to examine the association of childhood cancer…

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%,…

Shared Spiritual Beliefs between Adolescents with Cancer and Their Families

BACKGROUND: FAmily CEntered (FACE) Advance Care Planning helps family decision makers to understand and honor patients' preferences for future health care, if patients cannot communicate. Spiritual well-being is a key domain of pediatric oncology…

Serious adverse events after measles-mumps-rubella vaccination during a fourteen-year prospective follow-up

BACKGROUND: Several disorders have been attributed to measles-mumps-rubella (MMR) vaccination during the past decade. The aim of this prospective follow-up study was to identify serious adverse events causally related to MMR vaccination. METHODS:…

Seizures in children with congenital hydrocephalus: long-term outcome

We documented seizures in 33 of 68 (48.5%) children with congenital hydrocephalus not associated with myelomeningocele. Mental retardation (MR) and CNS malformations correlated with seizure occurrence; age at shunt insertion and number of shunt…

Tags: 1992, Analysis of Variance, Backlog, Blake JN, Child, Epilepsy/etiology/physiopathology, Follow-up Studies, Humans, Hydrocephalus/complications/physiopathology, Infant, Journal Article, Neurology, Noetzel MJ, Preschool, Prognosis, Q3 Scoping Review Results, Recurrence, Regression Analysis

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…

Reduced life expectancy in 40 cases of early onset cerebellar ataxia with retained tendon reflexes: a population-based study

A survival analysis of 40 cases of early onset cerebellar ataxia (EOCA) with retained tendon reflexes was performed. They represent all cases of EOCA diagnosed between 1945 and 1990 among residents of a defined area of Northwestern Italy, followed up…

Radiological manifestations of bisphosphonate treatment with APD in a child suffering from osteogenesis imperfecta

A 12-year-old female suffering from osteogenesis imperfecta (OI) was treated with 3-amino-1-hydroxypropylidene-1,1-bisphosphonate (APD) orally, 250 mg daily, for periods of 2 months, alternating with periods of 2 months of abstinence. Total duration…

Tags: 1987, Backlog, Child, Clodronate, Devogelaer JP, Diphosphonates/therapeutic use, Female, Follow-up Studies, Humans, Journal Article, Maldague B, Malghem J, Nagant de Deuxchaisnes C, Osteogenesis Imperfecta/drug therapy/radiography, Skeletal Radiology

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

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

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…

Predictors of husbands' and wives' grief reactions following infant death: the role of marital intimacy

This follow-up study examined how bereaved couples' grief reactions change over time and how the quality of the marriage can predict these reactions for men and women. A group of 31 bereaved couples who 2 to 4 years earlier had lost an infant (…

Tags: 1996, Amsel R, Backlog, Death studies, Fetal Death, Follow-up Studies, Gottlieb LN, Grief, Humans, Infant, Infant Mortality, Journal Article, Lang A, Marriage, Newborn, Parent caregivers, Questionnaires, Spouses/psychology

Predictors of burden in spouse caregivers of individuals with Alzheimer's disease

This study used the following model of distress: Distress = [Exposure to Stress + Vulnerability]/[Psychological and Social Resources]. The constructs in the model were operationalized as (a) distress in response to caregiver experiences (burden); (b)…

Postbereavement depressive mood and its prebereavement predictors in HIV+ and HIV- gay men

Prebereavement predictors of the course of postbereavement depressive mood were examined in 110 gay men who were their partner's caregiver until the partner's death of AIDS. In all, 37 HIV+ and 73 HIV- bereaved caregiving partners were assessed…

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.…

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…

Pediatric palliative care patients: a prospective multicenter cohort study

OBJECTIVE: To describe demographic and clinical characteristics and outcomes of patients who received hospital-based pediatric palliative care (PPC) consultations. DESIGN, SETTING, AND PATIENTS: Prospective observational cohort study of all patients…

Pediatric Palliative Care in Iran: Applying Regionalization of Health Care Systems

Parents of children diagnosed with cancer: work situation and sick leave, a five-year post end-of-treatment or a child's death follow-up study

BACKGROUND: Cancer in a child is associated with a significant impact on parental employment. We assessed the proportions of parents of survivors and bereaved parents working and reporting sick leave five years after end of successful treatment…

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…

Parent and clinician preferences for location of end-of-life care: Home, hospital or freestanding hospice?

BACKGROUND: Current options for location of end-of-life (EOL) care for children with cancer include home, hospital, and freestanding pediatric hospice (FSPH). However, access to these options varies greatly depending on geographical location. We…

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