Browse Items (78 total)

BACKGROUND:
Perinatal palliative care (PPC) programs are proliferating nationwide, but little is known about their structure, process, or desired outcomes, to inform future program development.
OBJECTIVE:
To explicate structure, processes, and…

Measurement of quality indicators (QIs) in perinatal palliative care has not been addressed. Parents who chose to continue pregnancy after a diagnosis of a life-limiting fetal condition described perceptions of quality care and their satisfaction…

Pediatric palliative medicine/care (PPC) is an approach to care that focuses on improving the quality of life of children facing a life limiting condition (LLC). LLCs are classified by the ACT (Association for children with life-threatening or…

Aim Symptom assessment is a core component of paediatric palliative care. This audit aimed to determine whether the symptoms of children attending for routine short breaks in a children's hospice were assessed. The development of a formal symptom…

Aims Patients with Trisomy 18 have a poor prognosis-only 5%-10% of children survive beyond the first year; however various clinical features of Trisomy 18 such as gastrointestinal, cardiac and central nervous system anomalies may benefit from…

Background: Geography and population distribution present challenges to the care of children with life-limiting conditions (LLC) within Australia. Children and young people have unique needs in relation to the provision of palliative care within…

CONTEXT: Specialized pediatric palliative home care (SPPHC) is the main pediatric palliative care structure in Germany. Detailed data on patient characteristics and care are sparse. Describing this population in terms of diagnoses and care needs is…

The aim of this study was to clarify advanced cancer patients' communication preferences regarding ending anticancer treatment and transitioning to palliative care, and to explore variables associated with these preferences. Participants were 106…

Background: The care of pediatric patients with cancer and their families is complex and evolving. Despite significant advances in outcomes, symptoms of disease and complications of therapy continue to cause pain and other symptoms that could be…

Background: There are 600 new pediatric cancer cases in Chile in a year, with an overall survival of 70% and there are two systems that guarantee the access for patients to health providers: The public system, or national health fund (FONASA), and…

Background: Giving care to a patient at the end of life can be a challenging and confronting experience. The responsibilities of care giving may include executing complex physical and mental tasks, financial planning, patient care decision making,…

Objective: While attention bias modification (ABM) is a promising novel treatment for anxiety disorders, clinical trial data remain restricted to adults. The authors examined whether ABM induces greater reductions in pediatric anxiety symptoms and…

This review centers on important recent advances in the understanding of the role of glial fibrillary acidic protein in Alexander disease and of proteolipid protein in hypomyelinating disorders such as Pelizaeus-Merzbacher and spastic paraplegia. We…

Cerebral palsy refers to a neurologic disorder of motor skills that is static in nature and is the result of injury to the brain before its development is complete. Many neurodegenerative or metabolic disorders have a slow rate of progression and can…

Neuromuscular disorders are common causes of weakness and hypotonia in the infantile period and in childhood. Accurate diagnosis of specific neuromuscular disorders depends first on identification of which aspect of the peripheral neuromuscular…

Pediatric neurologic diseases are often associated with different kinds of sleep disruption (mainly insomnia, less frequently hypersomnia or parasomnias). Due to the key-role of sleep for development, the effort to ameliorate sleep patterns in these…

The classification of diseases affecting white matter has changed dramatically with the use of magnetic resonance imaging. Classical leukodystrophies, such as metachromatic leukodystrophy and Krabbe's disease, account for only a small number of…

We report the case of a 6-year-old boy with X-linked adrenoleukodystrophy (ALD). In view of the acute onset of vomiting, fever, and coma, encephalitis was initially suspected. However, brain magnetic resonance imaging demonstrated a pattern of…

We describe two patients with juvenile-onset Niemann-Pick disease type C (NPC) to illustrate the variable neurologic features of this condition. One presented with hypersplenism at age 10 and was misdiagnosed with Gaucher disease. He developed…

A 3 1/2-year-old boy presented at three months of age with an acute episode of lethargy, somnolence, hypoglycemia, hepatomegaly, and cardiomegaly, which responded poorly to restoration of the blood sugar level to normal. The absence of ketonuria…

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,"…

Despite repeated initiatives over the past decade, migraine remains under-recognised, under-diagnosed and under-treated in everyday clinical practice. The Migraine in Primary Care Advisors (MIPCA) group has produced new guidelines for migraine…

Infantile systemic hyalinosis and juvenile hyaline fibromatosis are presumably autosomal recessive inherited diseases of unknown origin in which accumulation of an amorphous, hyaline material occurs in the skin and other organs. Both disorders may…

OBJECTIVE: The aim of this study was to examine the possible role of the immune system in the pathophysiology of chronic fatigue syndrome and fibromyalgia syndrome and in the differential diagnosis of depression by investigating changes in peripheral…

Early infantile Krabbe disease is relatively frequent in the Muslim-Arab population in Israel. It can be easily diagnosed when it presents with the classic clinical picture characterized by central nervous system manifestations of spasticity,…

The poor response to hypercaloric feeding in ill adults may be caused by failure to distinguish cachexia from starvation (Table 1). The chief difference between starvation and cachexia is that refeeding reverses starvation but is less effective for…

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