Browse Items · Pediatric Palliative Care Library

Functional electrical stimulation therapy for recovery of reaching and grasping in severe chronic pediatric stroke patients

Stroke affects 2.7 children per 100,000 annually, leaving many of them with lifelong residual impairments despite intensive rehabilitation. In the present study the authors evaluated the effectiveness of 48 hours of transcutaneous functional…

Treatment of children with unexplained chronic pain

2006

Tags: 2006, Adolescent, Backlog, Child, Chronic Disease/therapy, Cognitive Therapy/methods, Humans, Journal Article, Kashikar-Zuck S, Lancet, Pain/classification/psychology/therapy, PedPal Lit, Severity Of Illness Index

Advance care planning in adolescents with cystic fibrosis: A quality improvement project

INTRODUCTION: Advance care planning (ACP), though recommended, has not been studied in adolescents with cystic fibrosis (CF). This quality improvement project engaged adolescents with advanced CF disease in ACP and assessed patient and CF provider…

Limiting And Withdrawing Life Support In The Picu: For Whom Are These Options Discussed?

Most deaths in U.S. PICUs occur after a decision has been made to limitation or withdrawal of life support. The objective of this study was to describe the clinical characteristics and outcomes of children whose families discussed limitation or…

Limiting And Withdrawing Life Support In The Picu: For Whom Are These Options Discussed?

OBJECTIVES: Most deaths in U.S. PICUs occur after a decision has been made to limitation or withdrawal of life support. The objective of this study was to describe the clinical characteristics and outcomes of children whose families discussed…

Pain in children with cerebral palsy: a review.

Children with cerebral palsy (CP) face many challenges including impaired motor control and coordination, functional impairment, sensory disturbances, and, sometimes, communication difficulties and cognitive deficits. Pain also may be a problem for…

The Impact of Mortality on Total Costs Within the ICU

OBJECTIVES: The high cost of critical care has engendered research into identifying influential factors. However, existing studies have not considered patient vital status at ICU discharge. This study sought to determine the effect of mortality upon…

A modified Hammersmith functional motor scale for use in multi-center research on spinal muscular atrophy

The Hammersmith functional motor scale for children with spinal muscular atrophy was modified to establish a standard measure of functional ability in children with non-ambulant spinal muscular atrophy types 2 and 3 in a longitudinal multi-center…

Usefulness of consecutive biomarkers measurement in the management of community-acquired pneumonia.

The aim of this study was to investigate whether procalcitonin (PCT), neopterin,

Anorexia/cachexia-related quality of life for children with cancer

BACKGROUND: Anorexia is a common symptom in patients with cancer, which can lead to poor tolerance of treatment and can contribute to cachexia in extreme cases. Children with advanced-stage cancer are especially vulnerable to malnutrition resulting…

The Carter Neurocognitive Assessment for children with severely compromised expressive language and motor skills

In this paper, different means of assessing cognitive development in children with severe impairments in both their expressive language and their motor skills are reviewed. A range of techniques are considered, including traditional cognitive tests…

The Spanish version of the dementia quality of life questionnaire: a validation study

BACKGROUND: The aim of the study was to adapt and validate culturally the dementia-specific health-related quality of life instrument (HRQoL) into Spanish for patients with mild to moderate dementia. METHODS: Two forward translations, a reconciled…

Sleep in individuals with Cri du Chat syndrome: a comparative study

BACKGROUND: Sleep problems are common in individuals with intellectual disability. Little is known about sleep in children and adults with Cri du Chat syndrome (CDC).;METHOD: Sleep was investigated in 30 individuals with CDC using a sleep…

Health care resource utilization in adults with congenital heart disease

The number of adults with congenital heart disease (CHD) is increasing. However, rates of health care resource utilization in this population are unknown. The objectives of this study were to describe the use of general health care resources in…

Warfarin for atrial fibrillation. The patient's perspective

OBJECTIVE: To determine the minimal clinically important difference (MCID) of warfarin therapy for the treatment of nonvalvular atrial fibrillation from the perspective of patients using 2 different elicitation methods. DESIGN: All patients completed…

Leigh's syndrome

A 15-month-old female child presented with sudden onset cough and hyperventilation along with evidence of metabolic acidosis. She had past history of recurrent vomiting, episodes of abnormal posturing, difficulty in deglutition and regression of…

Long-stay patients in the pediatric intensive care unit

OBJECTIVE: Length of stay in the pediatric intensive care unit (PICU) is a reflection of patient severity of illness and health status, as well as PICU quality and performance. We determined the clinical profiles and relative resource use of…

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

Nurses' attitudes to pain management during routine venepuncture in young children

Venepuncture is one of the most commonly performed clinical procedures carried out on young children. Evidence indicates inconsistency in the use of pain management strategies during these procedures. A survey method was used to explore nurses' views…

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.…

Comparison of continuous subcutaneous and intravenous hydromorphone infusions for management of cancer pain

To compare the safety and efficacy of subcutaneous and intravenous infusion of opioid analgesics, a randomised, double-blind, crossover trial was carried out in inpatients. 15 patients with severe cancer pain received two 48 h infusions of…

Initial development and validation of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD).

This paper reports the development and validation of a disease-specific measure of health status and well-being of children with severe cerebral palsy (CP). The Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) was…

The gross motor function measure is a valid and sensitive outcome measure for spinal muscular atrophy

Spinal muscular atrophy is a genetic disease of the anterior horn cell with high morbidity rate in childhood. Certain drugs may be of benefit and are in or under consideration for Phase II trials. Outcome measures that are age appropriate and…

Development of global rating instruments for pediatric patients with ataxia telangiectasia

INTRODUCTION: Ataxia telangiectasia (AT) is a neurodegenerative disorder with cerebellar and extrapyramidal features. Interventional and epidemiological studies in AT should rely on specific scales which encompass the specific neurological features,…

Movement disorder in ataxia-telangiectasia: treatment with amantadine sulfate

Ataxia-telangiectasia is a cerebellar neurodegenerative disorder presenting with ataxia, chorea, myoclonus, and bradykinesia. Literature on treatment of movement disorders is scarce. We treated 17 children (aged 11.2 +/- 3.9 years) for 8 weeks with…

Coping with Dravet syndrome: parental experiences with a catastrophic epilepsy

The aim of this study was to investigate how parents cope with and care for a child with Dravet syndrome, a severe myoclonic epilepsy with three distinct stages. Twenty-four parents of children with Dravet syndrome participated in a semi-structured…

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…

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…

Symptoms of anxiety and depression in family members of intensive care unit patients before discharge or death. A prospective multicenter study

STUDY OBJECTIVES: More than two thirds of family members visiting intensive care unit (ICU) patients have symptoms of anxiety or depression during the first days of hospitalization. Identifying determinants of these symptoms would help caregivers…

Pediatric risk of mortality (PRISM) score

The Pediatric Risk of Mortality (PRISM) score was developed from the Physiologic Stability Index (PSI) to reduce the number of physiologic variables required for pediatric ICU (PICU) mortality risk assessment and to obtain an objective weighting of…

Tags: 1988, Backlog, Child, Critical Care Medicine, Getson PR, Humans, Infant, Infant Mortality, Intensive Care Units, Journal Article, Mortality, Multicenter Studies as Topic, Pediatric, Pollack MM, Preschool, Risk Factors, ROC Curve, Ruttimann UE, Severity Of Illness Index

The Memorial Symptom Assessment Scale: an instrument for the evaluation of symptom prevalence, characteristics and distress

The Memorial Symptom Assessment Scale (MSAS) is a new patient-rated instrument that was developed to provide multidimensional information about a diverse group of common symptoms. This study evaluated the reliability and validity of the MSAS in the…

Driscoll Children's Hospital respiratory syncytial virus database: risk factors, treatment and hospital course in 3308 infants and young children, 1991 to 2002

BACKGROUND: Treatment of respiratory syncytial virus (RSV) lower respiratory tract infection has historically been one of the most frequent reasons for admission to Driscoll Children's Hospital. OBJECTIVE: The objective of this study was to examine…

The health and well-being of caregivers of children with cerebral palsy.

OBJECTIVE: Most children enjoy healthy childhoods with little need for specialized health care services. However, some children experience difficulties in early childhood and require access to and utilization of considerable health care resources…

Assessing the clinical importance of symptomatic improvements. An illustration in rheumatology

OBJECTIVE: To estimate when a difference in disability symptoms is sufficiently large to be important to individual patients. DESIGN: Cross-sectional analysis of two groups: derivation set (n = 46) and validation set (n = 57). SETTING: The Arthritis…

Clinician predictions of intensive care unit mortality

OBJECTIVE: Predicting outcomes for critically ill patients is an important aspect of discussions with families in the intensive care unit. Our objective was to evaluate clinical intensive care unit survival predictions and their consequences for…

Links between abnormal brain structure and cognition in holoprosencephaly

Converging information on medical issues, motor ability, and cognitive outcomes is essential when addressing long-term clinical management in children with holoprosencephaly. This study considered whether adding more informative structural indices to…

Duration and morbidity of newly diagnosed idiopathic thrombocytopenic purpura in children: A prospective Nordic study of an unselected cohort

OBJECTIVE: To determine the duration of the risk period with platelet counts 1 month and 25 had 30 events. Among 93 patients with chronic ITP, 73 were at risk >1 month and 44 had 111 events. Events occurred with an average frequency of 0.39 per month…

Objective assessment of changing mortality risks in pediatric intensive care unit patients.

OBJECTIVE: To develop and validate a mortality risk predictor based on physiologic data that estimates daily the probability of a patient dying within the next 24 hrs as that probability changes with disease and recovery. SETTING: Nine pediatric ICUs…

Classification and definition of disorders causing hypertonia in childhood

OBJECTIVE: This report describes the consensus outcome of an interdisciplinary workshop that was held at the National Institutes of Health in April 2001. The purpose of the workshop and this article are to define the terms "spasticity," "dystonia,"…

Behavioral aspects of Lesch-Nyhan disease and its variants

Self-injury is a defining feature of lesch-nyhan disease (LND) but does not occur in the less severely affected Lesch-Nyhan variants (LNV). The aim of this study was to quantify behavioral and emotional abnormalities in LND and LNV. Thirty-nine…

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