Browse Items (2310 total)
- Tags: Humans
COVID-19 in pediatric palliative care: what can we learn from the pandemic and possible future directions
Esophageal strictures in children with recessive dystrophic epidermolysis bullosa: an 11-year experience with fluoroscopically guided balloon dilatation
Tags: 2006, 24GP945V5T (Barium), Adolescent, Azizkhan R G, barium, Catheterization, Child, Cohen A P, Dystrophica/co [Complications], epidermolysis bullosa, Esophageal Stenosis/et [Etiology], Esophageal Stenosis/th [Therapy], Farrell M K, feeding difficulties, Female, fluoroscopically guided balloon dilatation, Hammelman B D, Humans, Johnson N D, Journal Of Pediatric Surgery, Lucky A W, Male, Preschool, Racadio J M, Retrospective Studies, Stehr W, surgical intervention, Treatment Outcome, Wittkugel E
Parent engagement in perinatal mortality reviews: an online survey of clinicians from six high-income countries
Tags: 2021, April 2021 List, Bakhbakhi D, Bereavement Care, Bjog, Boyle FM, Burden C, Cross-sectional Studies, Developed Countries, Female, Flenady V, Health Care Surveys, Horey D, Humans, Infant Newborn, Male, Medical Audit/methods, parent engagement, Parents, Patient Participation, Patient Safety, Perinatal Mortality, perinatal mortality review, Siassakos D, Silver RM, Stillbirth
Melatonin treatment in individuals with intellectual disability and chronic insomnia: a randomized placebo-controlled study
Tags: 2008, Adolescent, Adult, Aged, Braam W, Central Nervous System Depressants/adverse effects/therapeutic use, Child, Child Preschool, chromosome 18q deletion, Chronic Disease, Comorbidity, Curfs L, Didden R, Double-Blind Method, Female, Humans, Journal Of Intellectual Disability Research, Male, melatonin, Melatonin/adverse effects/therapeutic use, Mental Retardation/epidemiology/psychology, Middle Aged, MPS III, pharmacologic intervention, Q3 Scoping Review Results, Saliva, sleep disturbance/disorders, Sleep Initiation and Maintenance Disorders/drug therapy/epidemiology/psychology, Smits M, Time Factors, Treatment Outcome
Insights into the perception that research ethics committees are a barrier to research with seriously ill children: A study of committee minutes and correspondence with researchers studying seriously ill children
Tags: 2020, Adolescent, April 2021 List, Bluebond-Langner M, Butler AE, Child, Child Preschool, Content Analysis, Ethics Committees, Ethics Committees Research, Female, Human Experimentation/ethics, Humans, Infant, Infant Newborn, Male, Palliative Medicine, Research, Research Design, Terminally Ill, United Kingdom, Vincent K
Sleep problems in children with Sanfilippo syndrome.
Tags: 1996, Bax M, Child, Child Preschool, Colville G A, Developmental Medicine and Child Neurology, Female, Humans, Longitudinal Studies, Male, MPS III, Mucopolysaccharidosis III/classification, Mucopolysaccharidosis III/complications, psychological intervention, Questionnaires, Sleep Disorders/etiology, Sleep Disorders/therapy, sleep disturbance/disorders, Time Factors, Watters J P, Yule W
Genome Sequencing as a Diagnostic Test in Children With Unexplained Medical Complexity
Tags: 2020, Arje D, Buera J, Canada, Child, Child Preschool, Chitayat D, Cohen E, Cohn RD, Costain G, Curtis M, Female, Genetic Testing/statistics & numerical data, Hayeems RZ, Humans, JAMA Network Open, Luca S, Male, Marano M, March 2021 List, Marshall CR, Mendoza-Londono R, Meyn MS, Orkin J, Predictive Value of Tests, Prospective Studies, Reproducibility of Results, Reuter MS, Scherer SW, Snell M, Somatoform Disorders/diagnosis, Stavropoulos DJ, Sung WWL, Thiruvahindrapuram B, Trost B, Veenma D, Walker S, Whole Genome Sequencing/statistics & numerical data, Yuen RKC
Missing life stories. The narratives of palliative patients, parents and physicians in paediatric oncology
Tags: 2017, Adolescent, Adult, Attitude To Death, Attitude To Health, Bone Neoplasms/psychology, Child, De CE, Disease Progression, Dying, Elger BS, European Journal Of Cancer Care, Female, Humans, Leukemia/psychology, lived experience, Male, Medical Oncology, Middle Aged, Narration, Narrative, Neoplasms/psychology, oncologists, Oncology 2018 List, Paediatric oncology, Palliative Care, Parents, Pediatrics, Qualitative Research, Sarcoma/psychology, Soft Tissue Neoplasms/psychology, Stories, Switzerland, Wangmo T
Neuropsychological attention deficits in tuberous sclerosis complex (TSC)
Tags: 2009, Adolescent, alertness, American Journal of Medical Genetics Part A, Attention Deficit Disorder with Hyperactivity/psychology, Bolton P F, Case-Control Studies, characteristics, Child, de Vries P J, Female, Gardiner J, Humans, Male, neuropsychological attention deficits, Neuropsychological Tests, Task Performance and Analysis, Trajectory, Tuberous Sclerosis, Tuberous Sclerosis/psychology
Level of purposeful hand function as a marker of clinical severity in Rett syndrome
Tags: 2010, Adolescent, Adult, Age Factors, Bebbington A, characteristics, Child, Child Preschool, Cross-sectional Studies, Databases as Topic, Developmental Medicine and Child Neurology, Downs J, Female, Genotype, Ghosh S, Hand, Humans, Jacoby P, Kaufmann W E, Leonard H, Methyl-CpG-Binding Protein 2, Motor Activity, Mutation, Phenotype, Registries, Rett syndrome, Severity Of Illness Index, tone and motor problems, Trajectory, Video Recording, Walking, Williams A, Young Adult
Moral Distress of Clinicians in Canadian Pediatric and Neonatal ICUs
Tags: 2020, Canada, Child, Cross-sectional Studies, Dryden-Palmer K, Humans, Infant Newborn, Intensive Care Units Neonatal, Janvier A, Larson CP, March 2021 List, McNeil C, Moore G, Morals, Parshuram CS, Pediatric Critical Care Medicine, Roumeliotis N, Stress Psychological/diagnosis/epidemiology, Surveys And Questionnaires, Tomlinson G
Finding a way with words: Delphi study to develop a discussion prompt list for paediatric palliative care
Tags: 2020, Advance Care Planning, April 2021 List, Bradford NK, Child, Communication, Danby S, Delphi Technique, Ekberg S, Family/psychology, Herbert A, Humans, Johns K, Paediatrics, Palliative Care, Palliative Medicine, Pediatrics, Professional-family Relations, prompt list, Reminder Systems/instrumentation, Sansone H, Stakeholder Participation, Tarrant G, Yates P
Educational Perspectives: Palliative Care Education in Neonatal-Perinatal Medicine Fellowship
Development of a video-based evaluation tool in Rett syndrome
Tags: 2007, Adolescent, Adult, Burford B, Child, Diagnosis Differential, Downs J, Ellaway C, Feasibility Studies, feeding difficulties, Female, filming and coding protocol, Fyfe S, Humans, Journal of Autism and Developmental Disorders, Kaufmann W E, Laurvick C L, Leonard H, Lister J, Male, McIlroy O, Movement Disorders/diagnosis/etiology, Msall M, Phenotype, Philippe C, Reilly S, Rett syndrome, Rett Syndrome/complications/diagnosis, scale development, tone and motor problems, tool development, Videotape Recording
Melatonin for sleep problems in children with neurodevelopmental disorders: randomised double masked placebo controlled trial
Tags: 2012, Adolescent, Allport T, Appleton R, British Medical Journal, Central Nervous System Depressants/administration & dosage/adverse effects, Central Nervous System Diseases/complications, Child, Child Preschool, Child Behavior/drug effects, Choonara I, Developmental Disabilities/complications, Dose-Response Relationship Drug, Drug Monitoring, Edmond A, Family Health, Female, Gamble C, Gringras P, Humans, Jones A P, Male, melatonin, Melatonin/administration & dosage/adverse effects, Montgomery P, pharmacologic intervention, Polysomnography/methods, Q3 conditions, Severity Of Illness Index, sleep disturbance/disorders, Sleep Wake Disorders/diagnosis/drug therapy/etiology, Sleep/drug effects, Sutcliffe A, Treatment Outcome, unspecified Q3 conditions, Whitehouse W P, Wiggs L, Williamson P R
Prospective, phenotype-driven selection of critically ill neonates for rapid exome sequencing is associated with high diagnostic yield
Tags: 2020, Aged, Agrawal PB, Beggs AH, Bodamer O, Copenheaver D, Critical Illness, exome sequencing, Exome/genetics, Genetic Testing, Genetics in Medicine, Genetti CA, Gold NB, Gubbels CS, Humans, Infant, Infant Newborn, Intensive Care Unit, June 2021 List, Juusola J, Madden JA, Neonates, Parad RB, Phenotype, Prospective Studies, Roumiantsev S, Stoler J, VanNoy GE, Whole Exome Sequencing, Wojcik MH, Yang S, Yu TW
Health and sleep problems in Cornelia de Lange Syndrome: a case control study
Tags: 2008, Adolescent, Arron K, behavioral problems, Case-Control Studies, characteristics, Comorbidity, De Lange syndrome, De Lange Syndrome/epidemiology/psychology, Ear Diseases/epidemiology/psychology, Eye Diseases/epidemiology/psychology, Female, Gastrointestinal Diseases/epidemiology/psychology, Hall S, Health Status, Hernia/epidemiology/psychology, Humans, Intellectual Disability/epidemiology/psychology, Journal Of Intellectual Disability Research, Male, Oliver C, Prevalence, Self-Injurious Behavior/epidemiology/psychology, self-injury, Severity Of Illness Index, Skin Diseases/epidemiology/psychology, sleep disturbance, Sleep Wake Disorders/epidemiology, Sloneem J, Stomatognathic Diseases/epidemiology/psychology, Surveys And Questionnaires, Trajectory
Self-injurious behaviour in young children with Lesch-Nyhan syndrome
Tags: 2001, behavioral problems, characteristics, Child Preschool, Developmental Medicine and Child Neurology, Environment, Extinction Psychological, Hall S, Humans, Lesch-Nyhan syndrome, Lesch-Nyhan Syndrome/diagnosis/prevention & control, Male, Murphy G, Oliver C, Self-Injurious Behavior/prevention & control, self-injury, Severity Of Illness Index, Sign Language, Trajectory
Melatonin ineffective in neuronal ceroid lipofuscinosis patients with fragmented or normal motor activity rhythms recorded by wrist actigraphy
Tags: 0 (Antioxidants), 1999, Adolescent, Adult, Antioxidants/tu [Therapeutic Use], Child, Circadian Rhythm, Dose-Response Relationship, Drug Electrophysiology, Female, Hätönen T, Heiskala H, Humans, JL5DK93RCL (Melatonin), Kirveskari E, Laakso M L, Male, melatonin, Melatonin/tu [Therapeutic Use], Molecular Genetics and Metabolism, NCL3, Neuronal Ceroid-Lipofuscinoses/dt [Drug Therapy], pharmacologic intervention, Sainio K, Santavuori P, sleep disturbance/disorders, Sleep Wake Disorders/th [Therapy]
Constipation in epidermolysis bullosa: successful treatment with a liquid fiber-containing formula
Tags: 1997, Adolescent Child, Atherton D, Child, Clayden G, Constipation, Constipation/co [Complications], Constipation/th [Therapy], epidermolysis bullosa, Epidermolysis Bullosa/co [Complications], Female, fiber-containing liquid formula Enrich, Food, Formulated, Haynes L, Humans, Male, Pediatric Dermatology, pharmacologic intervention, Preschool
Crying out in pain-A systematic review into the validity of vocalization as an indicator for pain
Prospective study of spinal muscular atrophy before age 6 years. DCN/SMA Group
Tags: 1993, Browne R H, Buncher C R, characteristics, Child, Child Preschool, facial weakness, Female, Humans, Iannaccone S T, Infant, Male, Motor Skills/physiology, Muscle Contraction/physiology, Neurologic Examination, Pediatric Neurology, Prospective Studies, Range of Motion Articular/physiology, Reflex Stretch/physiology, Samaha F J, SMA1, Spinal Muscular Atrophies of Childhood/diagnosis/physiopathology, Sucking Behavior/physiology, tone and motor problems, tongue fasciculation, Trajectory
Validation of an Electronic Pediatric Index of Mortality 2 Score in a Mixed Quaternary PICU
Quantifying physical decline in juvenile neuronal ceroid lipofuscinosis (Batten disease)
Tags: 2011, Adams H, Adolescent, Adult, Analysis of Variance, Augustine E F, Beck C A, Child, Child Preschool, Cialone J, Cross-sectional Studies, Deblieck E A, Disabled Persons, Disease Progression, Dure L S, Genotype, Homozygote, Humans, Kwon J M, Levy E, Marshall F J, Membrane Glycoproteins, Mink J W, Molecular Chaperones, Mutation, NCL3, Neurology, Neuronal Ceroid-Lipofuscinoses, Neuropsychological Tests, Newhouse N J, Prospective Studies, Ramirez-Montealegre D, Regression Analysis, Reproducibility of Results, Rose K R, Rothberg P G, scale development, tone and motor problems, tool development, UBDRS, Vierhile A, Young Adult
Use of standardized body composition measurements and malnutrition screening tools to detect malnutrition risk and predict clinical outcomes in children with chronic conditions
Tags: 2020, Adolescent, American Journal of Clinical Nutrition, Anthropometry, Body Composition, Child, Child Preschool, Child Development, Child Nutrition Disorders/diagnosis, Chronic Disease, Clinical outcomes, Fawbert K, Female, Fewtrell M, Hill S, Humans, Kennedy K, Lara-Pompa NE, Macdonald S, Male, malnutrition, March 2021 List, nutritional risk, pediatric patients, Risk Factors, Screening, Shaw V, Valente J, Wells JC, Williams J
Assessment of sleep in children with mucopolysaccharidosis type III
Tags: 2014, Actigraphy, Adolescent, Bigger B, Canal M, Case-Control Studies, characteristics, Child, Cross E, Female, Grant S, Hare D J, Humans, JL5DK93RCL (Melatonin), Jones S, Langford-Smith K, Lomax M, Mahon L V, Male, Melatonin/me [Metabolism], MPSIIIA, MPSIIIB, Mucopolysaccharidosis III/pp [Physiopathology], PLoS One, Preschool, sleep disturbance/disorders, Sleep/ph [Physiology], Time Factors, Trajectory, Wraith J E
Caregiver-Child Discrepancies in Reports of Child Emotional Symptoms in Pediatric Chronic Pain
Tags: 2020, Allyn KE, anxiety, Anxiety/epidemiology, April 2021 List, Caregivers, Child, Children, chronic and recurrent pain, Chronic Pain, Depression, Emotions, Female, Humans, informant discrepancies, Journal of Pediatric Psychology, Male, Martin SR, Pain Measurement, Parents, Payne LA, Quality Of Life, Seidman LC, Zeltzer LK
To Disclose or Not to Disclose: A Case Highlighting the Challenge of Conflicts in Pediatric Disclosure
A Randomized Comparative Trial to Evaluate a PICU Navigator-Based Parent Support Intervention
Tags: 2020, Aniciete DY, Brown M, Charleston E, Child, Ciolino JD, Clayman ML, Communication, Derrington S, Frader J, Fragen P, Humans, Intensive Care Units Pediatric, Malakooti M, March 2021 List, Michelson KN, Parents, Pediatric Critical Care Medicine, Personal Satisfaction, Rychlik K, Sorce LR, Terminal Care, White D
Parent moral distress in serious pediatric illness: A dimensional analysis
The prevalence and phenomenology of repetitive behavior in genetic syndromes
Tags: 2009, Adolescent, Adult, Angelman Syndrome/epidemiology/psychology, Arron K, behavioral problems, Berg K, Burbidge C, characteristics, Child, Child Preschool, Cri-du-chat, Cri-du-Chat Syndrome/epidemiology/psychology, De Lange syndrome, De Lange Syndrome/epidemiology/psychology, Female, Fragile X Syndrome/epidemiology/psychology, Humans, Intellectual Disability/epidemiology/genetics/psychology, Journal of Autism and Developmental Disorders, London, Male, Middle Aged, Moss J, Oliver C, Phenotype, Prader-Willi Syndrome/epidemiology/psychology, Prevalence, repetitive behavior, Stereotyped Behavior, Surveys And Questionnaires, Syndrome, tone and motor problems, Trajectory, Young Adult
The association between environmental events and self-injurious behaviour in Cornelia de Lange syndrome
Tags: 2005, Adolescent Child, Arron K, behavioral problems, characteristics, Child, De Lange syndrome, De Lange Syndrome/ep [Epidemiology], Environment, Female, Hall S, Humans, Journal Of Intellectual Disability Research, Male, Moss J, Oliver C, Petty J, Preschool, Self-Injurious behavior, Self-Injurious Behavior/di [Diagnosis], Self-Injurious Behavior/ep [Epidemiology], Self-Injurious Behavior/px [Psychology], Severity Of Illness Index, Sloneem J, Trajectory
Healthcare utilization and costs of pediatric home mechanical ventilation in Canada
Tags: 2020, Adult, Ambulatory Care/economics, Amin R, Canada, Caregivers/economics, Child, Child Preschool, Coyte PC, Female, Guerriere D, Health Care Costs, Health Expenditures, healthcare costs, healthcare utilization, Home Care Services/economics, home mechanical ventilation, Humans, Katz SL, long-term mechanical ventilation, Longitudinal Studies, Male, March 2021 List, McKim DA, Middle Aged, Nonoyama ML, Patient Acceptance of Health Care, Pediatric Pulmonology, Pediatrics, Prospective Studies, Quality Of Life, Respiration Artificial/economics, Rose L, Tracheostomy, ventilator assisted individual, Wasilewski M, Zagorski B
Behavioural phenotype of Cornelia de Lange syndrome: case-control study
Tags: 2008, Adolescent, Adult, Arron K, Autistic Disorder/psychology, behavioral problems, Case-Control Studies, characteristics, Child, Child Preschool, Communication Disorders/psychology, Compulsive Behavior/psychology, De Lange syndrome, De Lange Syndrome/psychology, Female, global behavior disorder, Hall S, Humans, Male, Oliver C, Phenotype, Sloneem J, Surveys And Questionnaires, The British Journal of Psychiatry, Trajectory, Young Adult
The grief ritual of extracting and donating human milk after perinatal loss
Point-of-Care Complexity Screening Algorithm to Identify Children With Medical Complexity
Parental assessment of comfort in newborns affected by life-limiting conditions treated by a standardized neonatal comfort care program
Tags: 2018, Adult, Byrne M, Daho M, Female, Foe G, Humans, Infant, Intensive Care, Journal Of Perinatology, Male, Neonatal/og [Organization & Administration], New York, Newborn, November 2019 List, Palliative Care/mt [methods], Parents/px [psychology], Parravicini E, Patient Care Team/og [Organization & Administration], Patient Comfort/st [Standards], Practice Guidelines As Topic, Prospective Studies, Qualitative Research, Steinwurtzel R, Surveys And Questionnaires, Young Adult
Caring for Critically Ill Children With Suspected or Proven Coronavirus Disease 2019 Infection: Recommendations by the Scientific Sections' Collaborative of the European Society of Pediatric and Neonatal Intensive Care
Tags: 2021, Bansal M, Brierley J, Child, COVID-19, Critical Care, Critical Illness/therapy, Deep A, Hoskote A, Humans, Infant Newborn, Intensive Care Neonatal, Javouhey E, Jourdain G, Kneyber MCJ, Latten L, MacLaren G, March 2021 List, Morin L, Pediatric Critical Care Medicine, Pons-Odena M, Ricci Z, Rimensberger PC, SARS-CoV-2, Schlapbach LJ, Scholefield BR, Singh Y, Systemic Inflammatory Response Syndrome, Terheggen U, Tissières P, Tume LN, Verbruggen S
Prediction of Acquired Morbidity Using Illness Severity Indices in Pediatric Intensive Care Patients
Tags: 2020, Adolescent, Allen JC Jr, Child, Child Preschool, Critical Care, Hospital Mortality, Humans, Infant, Infant Newborn, Intensive Care Units Pediatric, Lee JH, March 2021 List, Morbidity, Ong C, Pediatric Critical Care Medicine, Retrospective Studies, Risk Factors, Senna S, Severity Of Illness Index, Singapore/epidemiology, Sultana R, Wong JJ
Enuresis and urinary incontinence in children and adolescents with spinal muscular atrophy
Tags: 2001, Adolescent, Backes M, BJU International, characteristics, Child, Enuresis/etiology/physiopathology, Female, Humans, Laufersweiler-Plass C, Male, Muscular Atrophy Spinal/complications/physiopathology, Nerve Degeneration/complications/physiopathology, Rudnik-Schoneborn S, SMA1, Trajectory, urinary incontinence, Urinary Incontinence/etiology/physiopathology, von Gontard A, Zerres K