Browse Items · Pediatric Palliative Care Library

Medication Management Through Collaborative Practice for Children With Medical Complexity: A Prospective Case Series

OBJECTIVE Care coordination for children and youth with special health care needs and medical complexity (CYSHCN-CMC), especially medication management, is difficult for providers, parents/caregivers, and patients. This report describes the creation…

Tags: 2024, Adolescent, Adult, Adverse Drug Reaction, adverse drug reactions, Article, Asthma, Blood Pressure, Bodenstab HM, bradycardia, cerebral blindness, Cerebral Palsy, Child, children with disability, Chronic Disease, Clinical Practice, collaborative practice, Congenital Malformation, Cost Control, Current Procedural Terminology, diazepam, diphenhydramine, drug information, Drug Therapy, drug-related side effects, Dysphagia, economics, Emergency Ward, Epilepsy, Female, health care facility, hospital readmission, Human, Hypotension, Infant, ipratropium bromide, Journal of Pediatric Pharmacology and Therapeutics, July List 2024, Length Of Stay, Long-Term Care, Major Clinical Study, Male, medication management, Medication therapy management, metoclopramide, Multiple Chronic Conditions, Nervous System, Neurology, Newborn, Paracetamol, Parrish RH, pediatric long term care facility, Pharmaceutical, pharmacist, Quinn J, salbutamol, Wo E

Development and Evaluation of a Child Neurology Resident Curriculum for Communication Around Serious Illness

Background: Communication around serious illness is a core competency for all residencies. One-fifth of neurology residencies have no curriculum. Published curricula use didactics or role-play to assess confidence performing this skill without…

Role of palliative care in fetal neurological consultations: Guiding through uncertainty and hope

Fetal neurology is a rapidly evolving and expanding field. Discussions about diagnosis, prognosis, treatment options, and goals of care often begin in the antenatal period. However, there are inherent challenges to fetal counseling of neurological…

Are we on the same page? Exploring pediatric patients' involvement with advance care planning

An Overview of Ethical Issues Raised by Medicolegal Challenges to Death by Neurologic Criteria in the United Kingdom and a Comparison to Management of These Challenges in the USA

Although medicolegal challenges to the use of neurologic criteria to declare death in the USA have been well-described, the management of court cases in the United Kingdom about objections to the use of neurologic criteria to declare death has not…

Tags: 2023, American Journal of Bioethics, Brain Injury, End-Of-Life Issues, Great Britain, Law, Lewis A, March List 2023, Neurology, Pediatric, Religion

New insights in pediatrics in 2021: choices in allergy and immunology, critical care, endocrinology, gastroenterology, genetics, haematology, infectious diseases, neonatology, neurology, nutrition, palliative care, respiratory tract illnesses and telemedicine

In this review, we report the developments across pediatric subspecialties that have been published in the Italian Journal of Pediatrics in 2021. We highlight advances in allergy and immunology, critical care, endocrinology, gastroenterology,…

The Challenges, Coping Mechanisms, and the Needs of the Inhospital Parents Caring for Children with Life-limiting Neurological Disorders: A Qualitative Study

OBJECTIVES: Parents who have children with complex lifelong and life-limiting neurological conditions experienced many stresses and anxieties throughout their lives as caregivers. However, this information is still very limited. The study aimed to…

Tags: 2021, Beng KT, challenges, Chan LC, Child, Coping, February 2022 List, Indian Journal Of Palliative Care, Life-limiting Condition, Need, Neurology, paediatric palliative care, Taib F

The Role of Perinatal Palliative Care in Fetal Neurology

Many serious or life-threatening neurologic conditions are first diagnosed during the fetal period, often following a routine prenatal ultrasound or sonographic evaluation after an abnormal aneuploidy screen. Such conditions represent a worrisome or…

Tags: 2021, American Journal of Perinatology, Bidegain M, December 2021 List, Ellestad S, fetal, fetal neurology, Lemmon ME, Neonatal, Neurology, Palliative Care, Perinatal Palliative Care, Rent SM

Characterization of Death in Infants With Neonatal Seizures

Background: Neonatal seizures are associated with death and neurological morbidity; however, little is known about how neonates with seizures die. Method(s): This was a prospective, observational cohort study of neonates with seizures treated at…

Stereotypies in Rett syndrome - Analysis of 83 patients with and without detected MECP2 mutations

Background: Hand stereotypies are considered a hallmark of Rett syndrome (RTT) and are usually described as symmetric movements at the midline. However, related pathologies may show the same type of involuntary movement. Furthermore, patients with…

A description of adaptive and maladaptive behaviour in children and adolescents with Cri-du-chat syndrome

Background Psychological tests can be useful to record adaptive and maladaptive behaviours of children with intellectual disability. The objective of this study was to describe the adaptive and maladaptive behaviour of children and adolescents with…

Measuring Friedreich ataxia: Interrater reliability of a neurologic rating scale

Measuring the severity of neurologic dysfunction in patients with inherited ataxias, including Friedreich ataxia (FA), is difficult because of the variable rate of progression, the variable age at onset and the variety of neural systems that may be…

Self-injurious behaviour in Cornelia de Lange syndrome: 2. association with environmental events

Background Self-injurious behaviour is commonly seen in Cornelia de Lange syndrome (CdLS). However, there has been limited research into the aetiology of self-injury in CdLS and whether environmental factors influence the behaviour. Methods We…

The Behavior Problems Inventory-Short Form for individuals with intellectual disabilities: Part II: reliability and validity

Background The Behavior Problems Inventory-01 (BPI-01) is an informant-based behaviour rating instrument for intellectual disabilities (ID) with 49 items and three sub-scales: Self-injurious Behavior, Stereotyped Behavior and Aggressive/Destructive…

Self-injurious behaviour in Cornelia de Lange syndrome: 1. Prevalence and phenomenology

Background Self-injurious behaviour is frequently identified as part of the behavioural phenotype of Cornelia de Lange syndrome (CdLS). We conducted a case-control study of the prevalence and phenomenology of self-injurious behaviour (SIB) in CdLS.…

Quantifying physical decline in juvenile neuronal ceroid lipofuscinosis (Batten disease)

OBJECTIVE: To use the Unified Batten Disease Rating Scale (UBDRS) to measure the rate of decline in physical and functional capability domains in patients with juvenile neuronal ceroid lipofuscinosis (JNCL) or Batten disease, a neurodegenerative…

Video game-based coordinative training improves ataxia in children with degenerative ataxia

Objective: Degenerative ataxias in children present a rare condition where effective treatments are lacking. Intensive coordinative training based on physiotherapeutic exercises improves degenerative ataxia in adults, but such exercises have…

Tags: 2012, ataxia, balance, Friedreich's ataxia, Giese M A, Ilg W, Neurology, physical intervention, Schatton C, Schicks J, Schols L, Synofzik M, tone and motor problems, video game-based coordinative training

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…

Increased prevalence of sleep-disordered breathing in Friedreich ataxia

Objectives: We sought to document the prevalence and nature of sleep-disordered breathing (SDB) in individuals with Friedreich ataxia (FRDA) as well as establish the relationship, if any, between SDB and clinical parameters of FRDA. Methods:…

Tags: 2013, adults, apnea syndrome, breathing difficulties, characteristics, Copland J, Corben L A, daytime sleepiness, Delatycki M B, Disease, Friedreich's ataxia, Ho M, Neurology, Neurosciences & Neurology, obstructive sleep apnea, Reliability, Scale, Tai G, Trajectory

The behavioural phenotype of Cornelia de Lange Syndrome: a study of 56 individuals

Background Few studies have investigated functional and behavioural variables of Cornelia de Lange Syndrome (CdLS) in a large sample of individuals. The aim of this study is to provide greater insight into the clinical, behavioural and cognitive…

A favorable response to antiparkinsonian treatment in juvenile neuronal ceroid lipofuscinosis

To study the effect of dopaminergic drugs on the parkinsonism in juvenile neuronal ceroid lipofuscinosis, the authors conducted an open study of 21 patients. According to the motor Unified PD Rating Scale (UPDRS) score, treatment was initiated with…

Tags: 2001, Aberg L E, levodopa, NCL3, NCL6, Neurology, pharmacologic intervention, Rajantie I, Rinne J O, Santavuori P, selegiline, tone and motor problems

Early Identification of Pediatric Neurology Patients With Palliative Care Needs: A Pilot Study

Palliative care services are beneficial for pediatric neurology patients with chronic, life-limiting illnesses. However, timely referral to palliative care may be impeded due to an inability to identify appropriate patients. The aim of this pilot…

Tags: 2019, American Journal of Hospice and Palliative Medicine®, Emrick L, interdisciplinary research, Jarrell JA, Lyons-Warren AM, Neurology, Palliative Care, Patient Care, Pediatrics, Pilot Projects, September 2019 List, Stowe RC

Patterns of paediatric end-of-life care: A chart review across different care settings in Switzerland

Background: Paediatric end-of-life care is challenging and requires a high level of professional expertise. It is important that healthcare teams have a thorough understanding of paediatric subspecialties and related knowledge of disease-specific…

Tags: 103-90-2 (paracetamol), 2018, Adolescent, Aebi C, Ansari M, Article, Baer R, Bergstraesser E, Bernet V, Bmc Pediatrics, Brazzola P, Bucher HU, Buder R, Cagnazzo S, Cardiology, Cause Of Death, Child, Child Care, Child Death, Cignacco E, Cohort Analysis, community care, Dinten B, Dorsaz A, Drug Use, Elmer F, Engberg S, Enriquez R, Eskola K, Fahrni-Nater P, Female, Finkbeiner G, Frey B, Frey U, Greiner J, Hassink RI, Health Care Utilization, Home Care, Hospital Admission, Human, Infant, Intensive Care Unit, invasive procedure, Keller S, Kretschmar O, Kroell J, Laubscher B, Leibundgut K, Length Of Stay, Life Sustaining Treatment, Major Clinical Study, Malaer R, Male, Medical Record Review, Meyer A, narcotic analgesic agent, Nelle M, Neonatology, Neuhaus T, Neurology, Newborn, Niggli F, October 2018 List, Oncology, Paracetamol, Perrenoud G, Pfammatter JP, Plecko B, Popovic MB, Ramelet AS, Resuscitation, Retrospective Study, Rupf D, Sennhauser F, September 2018 List, Stade C, Steinlin M, Stoffel L, Stuessi C, Switzerland, Terminal Care, Thomas K, Treatment Withdrawal, Von der Weid N, von Vigier R, Vonarburg C, Wagner B, Wernz B, Wieland J, Zimmermann K

Why brain death is considered death and why there should be no confusion

Neurologic determination of brain death is a complex assessment that may be misunderstood by nonspecialists and families. Recent guidelines clarify how to proceed with such an examination and are available to physicians, with the time of death in…

Tags: 2014, Backlog, Burkle CM, Journal Article, Neurology, Sharp RR, Wijdicks Eelco F

Prevalence and management of dystonia in a paediatric palliative care cohort

Objectives: Dystonia and seizures can be common, unpredictable and distressing neurological symptoms in paediatric palliative care. Emergency seizure management is increasingly under joint neurology and palliative care, often incorporated into…

Neurological palliative care in children

Background: The Centre for Pediatric Palliative Care at the Medical Center of the University of Munich is one of the largest in Germany. Care is provided yearly to 90-100 children with advanced lifelimiting diseases living at home (at a distance of…

Neuropathic pain redefinition and a grading system for clinical and research purposes

2008

Tags: 2008, Backlog, Campbell JN, Cruccu G, Dostrovsky JO, Griffin JW, Hansson P, Hughes R, Jensen TS, Journal Article, Neurology, Nurmikko T, Serra J, Treede R-D

Double homozygosity for mutations of AGL and SCN9A mimicking neurohepatopathy syndrome

Efficacy and tolerability of levetiracetam versus phenytoin after supratentorial neurosurgery

BACKGROUND: Antiepileptic drugs are routinely given after craniotomy. Though phenytoin (PHT) is still the most commonly used agent, levetiracetam (LEV) is increasingly administered for this purpose. This retrospective study compared the use of LEV…

Disease severity in children and adults with Pompe disease related to age and disease duration

Information about 255 children and adults with Pompe disease was gathered through a questionnaire. Disease severity was associated with disease duration and not with age; an early manifestation of the disease implied earlier wheelchair or ventilator…

Late-onset neurologic disease in glutaryl-CoA dehydrogenase deficiency

Neurologic disease in glutaryl-CoA dehydrogenase (GCDH) deficiency usually presents with acute encephalopathic crises before 2 years of age. The authors report two previously asymptomatic patients with macrocephaly presenting with progressive…

Natural history of Type A Niemann-Pick disease: possible endpoints for therapeutic trials

OBJECTIVE: To describe the disease course and natural history of Type A Niemann-Pick disease (NPD). METHODS: Ten patients with NPD-A (six male, four female; age range at entry: 3 to 6 months) were serially evaluated including clinical neurologic,…

Course of disability and respiratory function in untreated late-onset Pompe disease

Fifty-two untreated patients with late-onset Pompe disease completed questionnaires about their clinical condition and level of handicap at baseline and at 1-year (n = 41) and 2-year follow-ups (n = 40). During this period, declines in functional…

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

Natural history of nonketotic hyperglycinemia in 65 patients

BACKGROUND: Glycine encephalopathy, also known as nonketotic hyperglycinemia (NKH), is an autosomal recessive disorder caused by a defect in the glycine cleavage system. NKH is classically associated with neonatal apnea, lethargy, hypotonia, and…

Tags: 2004, Adolescent, Age of Onset, AIM, Anticonvulsants/tu [Therapeutic Use], Apnea/et [Etiology], Apnea/th [Therapy], Applegarth D, Artificial, Backlog, Child, Corpus Callosum/ab [Abnormalities], Disease Progression, Female, Glycine/bl [Blood], Glycine/cf [Cerebrospinal Fluid], Hamosh A, Health Surveys, Hoover-Fong JE, Humans, Hydrocephalus/ep [Epidemiology], Hydrocephalus/et [Etiology], Hyperglycinemia, IM, Infant, Journal Article, Juvenile/dt [Drug Therapy], Juvenile/ep [Epidemiology], Juvenile/et [Etiology], Male, Myoclonic Epilepsy, Neurology, Newborn, Nonketotic/co [Complications], Nonketotic/ep [Epidemiology], Nonketotic/me [Metabolism], Nonketotic/mo [Mortality], Nystagmus, Pathologic/ep [Epidemiology], Pathologic/et [Etiology], Pregnancy, Pregnancy Complications/ep [Epidemiology], Preschool, Psychomotor Disorders/ep [Epidemiology], Psychomotor Disorders/et [Etiology], Questionnaires, Registries, Respiration, Retrospective Studies, Seizures/dt [Drug Therapy], Seizures/ep [Epidemiology], Seizures/et [Etiology], Sex Factors, Shah S, Survival Analysis, Toone J, Van Hove JL

Practice parameter: pharmacological treatment of migraine headache in children and adolescents: report of the American Academy of Neurology Quality Standards Subcommittee and the Practice Committee of the Child Neurology Society

OBJECTIVE: To review evidence on the pharmacologic treatment of the child with migraine headache. METHODS: The authors reviewed, abstracted, and classified relevant literature. Recommendations were based on a four-tiered scheme of evidence…

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…

Neuroanatomy of holoprosencephaly as predictor of function: beyond the face predicting the brain

BACKGROUND: Despite advances in neuroimaging and molecular genetics of holoprosencephaly (HPE), the clinical spectrum of HPE has remained inadequately described. OBJECTIVE: To better characterize the clinical features of HPE and identify specific…

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

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…

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