Browse Items · Pediatric Palliative Care Library

Genome Sequencing as a Diagnostic Test in Children With Unexplained Medical Complexity

IMPORTANCE: Children with medical complexity (CMC) represent a growing population in the pediatric health care system, with high resource use and associated health care costs. A genetic diagnosis can inform prognosis, anticipatory care, management,…

Undernutrition at PICU Admission Is Predictor of 60-Day Mortality and PICU Length of Stay in Critically Ill Children

BACKGROUND: There are few studies that assess the role of different nutritional assessment variables at pediatric intensive care unit (PICU) admission in predicting clinical outcomes. OBJECTIVE: To identify nutritional variables in the first 4 days…

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…

Outcomes of unrelated umbilical cord blood transplantation for X-linked adrenoleukodystrophy

Adrenoleukodystrophy (ALD) is an X-linked disorder caused by a defect in the metabolism of long chain fatty acids leading to demyelination, neurodegeneration, and death. The disease typically presents in young boys and adolescent boys. Allogeneic…

Diagnostic yield of brain biopsies in children presenting to neurology

The role of brain biopsy is well established in patients with neoplastic lesions, with a diagnostic yield approaching 95%. The diagnostic yield of brain biopsy in adults with neurological decline varies from 20% to 43%. Only a few studies have…

Coping with chronic pain

Many models of pain give coping an important role in understanding adaptation to chronic pain. Among these, Lazarus and Folkman's cognitive-phenomenological model of stress and coping provides a theoretical framework to conceptualise stress phenomena…

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,…

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…

Understanding sleep-wake behavior and sleep disorders in children: the value of a model

PURPOSE OF REVIEW: Sleep-wake problems such as night wakings, excessive crying, or difficulties in falling asleep are frequent behavioral issues during childhood. Maturational changes in sleep and circadian regulation likely contribute to the…

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

One-year survival and neurological outcome after pediatric cardiopulmonary resuscitation

OBJECTIVE: Reported survival after cardiopulmonary resuscitation (CPR) in children varies considerably. We aimed to identify predictors of 1-year survival and to assess long-term neurological status after in- or outpatient CPR. DESIGN: Retrospective…

Decisions to forgo life-sustaining therapy in ICU patients independently predict hospital death

OBJECTIVE: More than one-half the deaths of patients admitted to intensive care units (ICUs) occur after a decision to forgo life-sustaining therapy (DFLST). Although DFLSTs typically occur in patients with severe comorbidities and intractable acute…

Treatment adherence of youth and young adults with and without a chronic illness

The present study was undertaken to explore the psychosocial functioning of young people with chronic illness, their beliefs about treatment adherence, difficulties with adherence and concerns about living with their illness. A small correlational…

Suicide ideation among parents bereaved by the violent deaths of their children.

Suicidal behaviors of parents bereaved by a child's suicide have received considerable attention by researchers, but deaths by other violent causes have not. We observed 175 bereaved parents for five years following three types of violent death:…

Brain damage markers in children. Neurobiological and clinical aspects

The presence in blood of proteins normally confined to the cytoplasm of brain cells is considered peripheral evidence of brain damage. Only recently have these proteins been measured in the blood of children at risk of brain damage. To show the value…

Validation of the Non-communicating Children's Pain Checklist-Postoperative Version

BACKGROUND: This study evaluated the psychometric properties of the Non-communicating Children's Pain Checklist-Postoperative Version (NCCPC-PV) when used with children with severe intellectual disabilities. METHODS: The caregivers of 24 children…

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…

Parents' evaluation of developmental status: how well do parents' concerns identify children with behavioral and emotional problems?

This study was undertaken to determine which parental concerns are most associated with significant behavioral/emotional problems and the extent to which parents' concerns can be depended on in the detection of mental health problems. An additional…

Psychosocial stress-induced activation of salivary alpha-amylase: an indicator of sympathetic activity?

Assessment of sympathoadrenal medullary system (SAM) activity is only possible to date via measurement of catecholamines in blood plasma or via electrophysiological methods. Both ways of measurement are restricted to endocrinological or…

Practice parameter: evaluation of children and adolescents with recurrent headaches: report of the Quality Standards Subcommittee of the American Academy of Neurology and the Practice Committee of the Child Neurology Society

OBJECTIVE: The Quality Standards Subcommittee of the American Academy of Neurology and the Practice Committee of the Child Neurology Society develop practice parameters as strategies for patient management based on analysis of evidence. For this…

Nature of conflict in the care of pediatric intensive care patients with prolonged stay

OBJECTIVE: To determine the frequency, types, sources, and predictors of conflict surrounding the care of pediatric intensive care unit (PICU) patients with prolonged stay. SETTING: A tertiary care, university-affiliated PICU in Boston. PARTICIPANTS:…

Contextual influences on school provision of health services

PURPOSE: To examine contextual factors that may facilitate or impede the provision of school health services. METHODS: Using a composite database derived primarily from the National Longitudinal Study of Adolescent Health, we used logistic regression…

Differences in pediatric ICU mortality risk over time

OBJECTIVES: To compare pediatric intensive care unit (ICU) mortality risk using models from two distinct time periods; and to discuss the implications of changing mortality risk for severity systems and quality-of-care assessment. DATA SOURCES AND…

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…

Support as a crucial predictor of good compliance of adolescents with a chronic disease

The purpose of this study was to describe the factors that predict compliance among adolescents with a chronic illness. The data were collected by questionnaires from adolescents with asthma, epilepsy, juvenile rheumatoid arthritis (JRA) and…

Stress, social support, and sense of coherence

In the Salutogenic Model, Aaron Antonovsky suggested that a sense of coherence (SOC) is the key determinant in the maintenance of health. He theorized that individuals with a strong SOC have the ability to (a) define life events as less stressful…

Practice parameter: screening and diagnosis of autism: report of the Quality Standards Subcommittee of the American Academy of Neurology and the Child Neurology Society

Autism is a common disorder of childhood, affecting 1 in 500 children. Yet, it often remains unrecognized and undiagnosed until or after late preschool age because appropriate tools for routine developmental screening and screening specifically for…

Sleep-disordered breathing and respiratory failure in acid maltase deficiency

BACKGROUND: Sleep-disordered breathing (SDB) and respiratory failure (RF) are complications of acid maltase deficiency (AMD), a rare hereditary myopathy. OBJECTIVE: To define the relationship between lung and respiratory muscle function, to establish…

The McGill Quality of Life Questionnaire: a measure of quality of life appropriate for people with advanced disease. A preliminary study of validity and acceptability

This is the first report on the McGill Quality of Life Questionnaire (MQOL), a questionnaire relevant to all phases of the disease trajectory for people with a life-threatening illness. This questionnaire differs from most others in three ways: the…

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