Browse Items · Pediatric Palliative Care Library

Efficacy and tolerance of gastrostomy feeding in pediatric forms of neuromuscular diseases

BACKGROUND: Percutaneous endoscopic gastrostomy (PEG) is a simple and reliable method, but there are few data about its use in pediatric forms of neuromuscular diseases (NMD). The aim of this study was to evaluate the nutritional effects and…

Melatonin treatment for sleep disorders in children with neurodevelopmental disorders: an observational study

The study aim was to quantify melatonin-associated improvement in sleep by means of a parent-completed sleep diary during routine outpatient activity. An investigation into sleep disturbance was made at neurology outpatient appointments. Those…

The Rett Syndrome Behaviour Questionnaire (RSBQ): refining the behavioural phenotype of Rett syndrome

Background: Although physical features, including loss of hand skills, deceleration of head growth, spasticity and scoliosis, are cardinal features of Rett syndrome (RS), a number of behavioural features are also associated with the disorder,…

Self-injurious behavior, self-restraint, and compulsive behaviors in Cornelia de Lange syndrome

Researchers have argued that individuals who show self-restraint are more likely to show self-injurious behavior (SIB) that is compulsive. Self-injurious behavior, self-restraint, and compulsive behaviors have been described as features of Cornelia…

Sleep disturbance in mucopolysaccharidosis type III (Sanfilippo syndrome): a survey of managing clinicians.

Sanfilippo syndrome (mucopolysaccharidosis type III) is the commonest mucoploysaccharidosis. It causes neurodegeneration with often profound sleep and behavioral disturbance. Management of the sleep disturbance is difficult and inconsistent. In this…

Tags: 2002, Behavior Therapy, characteristics, Clinical Genetics, Data Collection, Delatycki MB, Fraser J, Humans, MPS III, Mucopolysaccharidosis III/complications, NET Files, Physicians, Sleep Disorders/complications, Sleep Disorders/drug therapy, Sleep Disorders/therapy, sleep disturbance/disorders, Trajectory, Wraith JE

Psychiatric disorders and behavioral problems in children with velocardiofacial syndrome: usefulness as phenotypic indicators of schizophrenia risk

BACKGROUND: Velocardiofacial syndrome (VCFS), a genetic deletion condition with numerous cognitive sequelae, is associated with a high rate of psychiatric disorders in childhood. More recently, VCFS has been identified as a high-risk factor for…

Sleep problems and daytime problem behaviours in children with intellectual disability

BACKGROUND: Sleep problems are common among children with intellectual disability (ID). METHOD: The present study assessed the prevalence of severe sleep problems in a sample of children (n=286) with mild to profound ID who lived at home with their…

A survey of the prevalence of stereotypy, self-injury and aggression in children and young adults with Cri du Chat syndrome

The aim of the present study was to determine the prevalence and frequency of stereotypy, self-injurious behaviour (SIB), and aggression in children and adults with Cri du Chat syndrome (CCS), and to investigate the relationship between SIB,…

The effect of hand splints on stereotypic hand behavior in Rett's syndrome

The purpose of this study was to examine the effect of hand splints and one elbow restraint on persistent stereotypic hand movements of four girls with Rett's syndrome. Among the most characteristic features of Rett's syndrome are stereotypic hand…

Tags: 2002, Bumin G, Duger T, elbow restraint, hand splints, Kayihan H, physical intervention, Rett syndrome, stereotypic behavior, tone and motor problems, Topcu M, Turkish Journal of Pediatrics, Uyanik M

Deaths of pediatric patients: relevance to their medical home, an urban primary care clinic

2005

Tags: 1998, 2002, 2005, Academic Medical Centers Adolescent AdultCause of Death Child Child, and 19 (52%) were identified through the clinic-initiated tracking system for deaths that occurred outside the institution. Only 1 anticipated death occurred in the patient's home. Sixty-six percent of patients h(TRUNCATED), and June 31, and to compare the characteristics of deaths that were sudden, and whether an autopsy was performed. RESULTS: Thirty-six patient deaths were identified between July 1, Backlog, epidemiology United States%X BACKGROUND: The Institute of Medicine's report When Children Die emphasizes the importance of the medical home in end-of-life care, Hospital, Hospital-Based, Journal Article, Nellis ME, Newborn Male Outpatient Clinics, Pediatrics, PedPal Lit, preexisting medical conditions, Preschool Death FemaleHospital Mortality Hospitals, resident continuity clinic, Serwint JR, setting and cause of death, statistics & numerical data Primary Health Care Professional-Family Relations Sudden Infant Death, to determine the mechanisms of communication about these deaths, unexpected, Urban/statistics & numerical data Humans Infant Infant, within a clinic population of 7000 patients (average annual mortality rate: 0.13%). Seventeen patient deaths (48%) were identified through the institutional tracking system

Family perspectives on the quality of pediatric palliative care.

BACKGROUND: As a prelude to establishing a Pediatric Palliative Care Program, we solicited information from families about their experiences and their suggestions for improving the quality of end-of-life care. Participants were English- and…

Tags: 2002, Archives Of Pediatrics & Adolescent Medicine, Backlog, Cohen H, Contro N, Journal Article, Larson J, Longitudinal Studies, Scofield S, Sourkes B

Pediatric palliative care: the time has come.

2002

Tags: 2002, Archives Of Pediatrics & Adolescent Medicine, Attitude To Health, Backlog, Child, Child Psychology, Chronic Disease, Communication, Family/psychology, Humans, Hutton N, Journal Article, Longitudinal Studies, Needs Assessment, Palliative Care/methods/psychology/trends, Pediatrics/methods/trends, Professional-family Relations, Quality Of Life, Terminal Care/methods/psychology/trends

Physical functioning in female caregivers of children with physical disabilities compared with female caregivers of children with a chronic medical condition

OBJECTIVES: To evaluate if physical functioning is different in female caregivers of children with physical disabilities compared with female caregivers of children with nondisabling medical illnesses, and to investigate the factors associated with…

Bisphosphonates for the relief of pain secondary to bone metastases

BACKGROUND: Bisphosphonates form part of standard therapy for hypercalcemia and the prevention of skeletal events in some cancers. However, the role of bisphosphonates in pain relief for bony metastases remains uncertain. OBJECTIVES: To determine the…

Tags: 2002, Analgesics, Antineoplastic Agents/therapeutic use, Backlog, Bone Neoplasms/complications/drug therapy/secondary, Clodronate, Clodronic Acid/therapeutic use, Cochrane Database of Systematic Reviews, Diphosphonates/therapeutic use, Etidronic Acid/therapeutic use, Humans, Journal Article, Non-Narcotic/therapeutic use, Pain/drug Therapy, Randomized Controlled Trials, Wiffen PJ, Wong R

Benzodiazepines and related drugs for insomnia in palliative care

BACKGROUND: Insomnia, a subjective complaint of poor sleep and associated impairment in daytime function, is a common problem. Currently, benzodiazepines are the most used pharmacological treatment for this complaint. They are considered helpful for…

Tags: 2002, Backlog, Benzodiazepines/therapeutic Use, Cochrane Database of Systematic Reviews, Hirst A, Humans, Journal Article, Palliative Care, Sleep Initiation and Maintenance Disorders/drug therapy, Sloan R

Late infantile neuronal ceroid lipofuscinosis: quantitative description of the clinical course in patients with CLN2 mutations

We examined 26 individuals with clinical and electron microscopic signs of late infantile neuronal ceroid lipofuscinosis (LINCL). In 22 cases, we found both pathogenic alleles. Sixteen patients exclusively carried either one or a combination of the…

Cancer incidence in parents who lost a child: a nationwide study in Denmark

BACKGROUND: It has been debated whether psychological stress causes cancer, but the scientific evidence remains contradictory. The objective of this study was to investigate whether the death of a child is related to cancer risk in bereaved parents.…

Gender differences in burden and depression among informal caregivers of demented elders in the community

BACKGROUND: Earlier studies have yielded inconsistent findings regarding gender differences with respect to burden and depression among informal community caregivers of dementia patients. OBJECTIVES: The aim of the study was to determine whether or…

Positive aspects of caregiving: rounding out the caregiver experience

OBJECTIVES: To identify positive aspects of caregiving and examine how they are associated with caregiver outcomes. METHOD: This study used a national sample of caregivers derived from the Canadian Study of Health and Aging (part 2). Two hundred and…

Osteopenia in children with acute lymphoblastic leukemia: a pilot study of amelioration with Pamidronate

Having a brain tumour: A journey through life

The syndrome of cardiac cachexia

Cachexia, i.e. body wasting, has long been recognised as a serious complication of chronic illness. The occurrence of wasting in chronic heart failure (CHF) has been known for many centuries, but it has not been investigated extensively until…

Tags: 2002, Anker SD, Backlog, Cachexia/diagnosis/etiology/therapy, Congestive/complications/diagnosis/therapy, Greece, Heart Failure, Humans, International Journal Of Cardiology, Journal Article, Non-U.S. Gov't, Prognosis, Research Support, Sharma R, Syndrome

Clinical phenotype, prognosis and mitochondrial DNA mutation load in mitochondrial encephalomyopathies

We studied 42 individuals, including 8 patients with either complete or partial syndrome of mitochondrial myopathy, encephalopathy, lactic acidosis and stroke-like episodes (MELAS), 8 patients with either complete or partial syndrome of myoclonic…

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…

The impact of a palliative medicine consultation service in medical oncology.

This prospective study of consecutive patients describes the palliative medicine consult service in a tertiary level cancer center and its impact on patient care. All inpatients/outpatients referred to the Palliative Medicine Program in a 4-month…

Bisphosphonates for cancer patients: why, how, and when?

Bisphosphonates (BPs) are potent inhibitors of osteoclast-mediated bone resorption, and it is well accepted that tumor cells in bone, especially breast cancer and myeloma cells, can stimulate osteoclast formation and activity leading to the release…

Tags: 2002, Backlog, Body JJ, Bone Neoplasms/complications/drug therapy/prevention & control/secondary, Breast Neoplasms/pathology, Diphosphonates/therapeutic use, Female, Humans, Hypercalcemia/etiology/prevention & control, Journal Article, Male, Mancini I, Multiple Myeloma/pathology, Neoplasm Metastasis/prevention & control, Prostatic Neoplasms/pathology, Randomized Controlled Trials, Supportive Care In Cancer : Official Journal Of The Multinational Association Of Supportive Care In Cancer

Neuropeptides: modulators of immune responses in health and disease

2002

Tags: 2002, Animals, Autoimmune Diseases/immunology, Backlog, Humans, Immune System/physiology, International Review Of Neurobiology, Jessop DS, Journal Article, Neuropeptides/physiology, Neurotransmitter Agents/physiology, Non-U.S. Gov't, Research Support, Stress/immunology

The reactions to research participation questionnaires for children and for parents (RRPQ-C and RRPQ-P)

Systematic assessment of the effect of clinical research studies on child and parent participants has been limited. Such assessment could provide an empirical basis for the ethical conduct of research, assisting investigators and institutional review…

Immunohistochemical localization of endomorphin-1 and endomorphin-2 in immune cells and spinal cord in a model of inflammatory pain

Recently, two novel highly selective mu-opioid receptor (MOR) agonists, endomorphin-1 and endomorphin-2, have been isolated from bovine as well as human brains and were proposed to be the endogenous ligand for MOR. Later, endomorphin-1 and…

Neurohormonal factors in the development of catabolic/anabolic imbalance and cachexia

Mechanisms that lead to cachexia are still poorly understood. The neurohormonal changes that occur in severe disease states may cause an imbalance between protein synthesis and degradation at the cellular level, followed by muscle wasting. Here, we…

Tags: 2002, Animals, Anwar A, Backlog, Biological Markers/blood, Brink M, Cachexia/etiology/metabolism, Congestive/complications/metabolism, Cytokines/metabolism, Delafontaine P, Glucocorticoids/metabolism, Heart Failure, Humans, Insulin-Like Growth Factor I/metabolism, International Journal Of Cardiology, Journal Article, Neurotransmitter Agents/metabolism, Renin-Angiotensin System/physiology

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