Browse Items (359 total)
- Tags: 2016
Knowledge Translation from Research to Clinical Practice: Measuring Participation of Children with Disabilities
Health and quality of life among the caregivers of children with disabilities: A review of literature
Differences and similarities between mothers and fathers of premature children: a qualitative study of parents' coping experiences in a neonatal intensive care unit.
Tags: *Adaptation, Psychological, *Fathers/px [Psychology], *Intensive Care Units, Neonatal, *Intensive Care, Neonatal/px [Psychology], *Mothers/px [Psychology], *Parent-Child Relations, *Professional-Family Relations, 2016, 2023 SE4 - Parent Perspectives, Adult, Bmc Pediatrics, Female, Hagen, I H, Humans, Infant, Newborn, Intensive Care Units, Neonatal/og [Organization & Administration], Intensive Care, Neonatal/mt [Methods], Intensive Care, Neonatal/og [Organization & Administration], Iversen, V C, Male, Middle Aged, Object Attachment, Qualitative Research, Social Support, Svindseth, M F
Sleep disorders in Cornelia de Lange syndrome
Tags: 2016, Adolescent, Adult, Ajmone P, American Journal of Medical Genetics Part C - Seminars in Medical Genetics, Article, body mass, Canevini M P, characteristics, Child, Clinical Article, Comorbidity, Controlled Study, De Lange syndrome, Epilepsy, Female, Fossati C, Furia F, Gastroesophageal Reflux, gene, gene mutation, Gervasini C, HDAC8 gene, histone deacetylase 8, Human, Intellectual Impairment, Kullman G, Male, Masciadri M, NIPBL gene, Priority Journal, problem behavior, RAD21 gene, Russo S, Selicorni A, sleep disorder, sleep disturbance/disorders, SMC1A gene, SMC3 gene, Taiana M, Trajectory, Turner K, Vignoli A, Zambrelli E
Functional and gait assessment in children and adolescents affected by Friedreich's ataxia: A one-year longitudinal study
Tags: 2016, Adolescent, Article, assessment of humans, Bella G D, Bertini E, Castelli E, characteristics, Child, Clinical Article, Controlled Study, Female, Friedreich's ataxia, functional assessment, Gait, Gait Analysis and the Scale for the Assessment and Rating of Ataxia, Gazzellini S, Human, Lispi M L, longitudinal study, Male, Petrarca M, Pisano A, PLoS One, Preschool Child, Reliability, step length, stride length, tone and motor problems, Trajectory, Vasco G, Walking, walking velocity, Zazza M
Development, behavior, and biomarker characterization of Smith-Lemli-Opitz syndrome: An update
Tags: 2016, 7 dehydrocholesterol/ec [Endogenous Compound], 8 dehydrocholesterol/ec [Endogenous Compound], adaptive behavior, Adolescent, Adult, Aggression, Albert P, Article, Autism, automutilation, Behavior, Bianconi S, Bukelis I, Case Study, cerebrospinal fluid level, characteristics, Child, Child Rearing, childhood, cholesterol/ec [Endogenous Compound], Clinical Article, Cognition, delayed development, development, Developmental delay, Farmer C, Female, Human, Intelligence Quotient, Interpersonal Communication, Joseph L, Journal of Neurodevelopmental Disorders, Lanham D, Male, Observational Study, Parent, Porter F D, Preschool Child, Priority Journal, problem behavior, Sarphare G, Smith Lemli Opitz syndrome, Smith-Lemli-Opitz syndrome, Socialization, Stanford-Binet Intelligence Scale, Sterols, Swedo S, Thurm A, Tierney E, tone and motor problems, Trajectory, Unclassified Drug, Walking, Wassif C A, Wheeler C, Young Adult
Otorhinolaryngological, Audiovestibular and swallowing manifestations of patients with Niemann-Pick disease Type C
Tags: 2016, Adolescent, Aksoy S, Akyol U, Article, aspiration scale, auditory response, Balance disorders, body equilibrium, characteristics, Child, Clinical Article, Controlled Study, Demir N, Dysphagia, Endoscopy, feeding difficulties, Female, Flexible endoscopy, hearing, hearing impairment, Hearing problems, Human, International Journal of Pediatric Otorhinolaryngology, Kuscu O, Male, Niemann Pick disease/di [Diagnosis], Niemann-Pick Disease, NPC, Otorhinolaryngology, penetration, postural imbalance, Preschool Child, Priority Journal, Prospective Study, pure tone audiometry, School Child, Senirli R T, stabilography, Swallowing, Swallowing disorders, tone and motor problems, Topcu M, Trajectory, vestibular system, Yigit O
Long-term clinical outcome of internal globus pallidus deep brain stimulation for dystonia
Development of global rating instruments for pediatric patients with ataxia telangiectasia
Tags: 2016, Adolescent, ataxia telangiectasia, ataxia telangiectasia/di [Diagnosis], Ataxia Telangiectasia/ep [Epidemiology], Ben-Zeev B, Borgohain R, Brief Ataxia Rating Scale, Child, Child Preschool, D'Agnano D, European Journal of Paediatric Neurology, Female, Hegde A U, Humans, ICARS, Leuzzi V, Male, Micheli R, Molinaro A, Mridula K R, Nissenkorn A, Pediatrics/mt [methods], SARA, scale development, Severity Of Illness Index, tone and motor problems, tool development, Yareeda S
Dilatation of esophageal strictures in epidermolysis bullosa patients: a single center experience
Tags: 2016, Children, complications, dilatation, Dysphagia, Endoscopic, epidermolysis bullosa, Esophageal stenosis, esophageal stricture dilatation, Esophagus, feeding difficulties, Gastroenterology & Hepatology, gastrointestinal manifestations, Karaman M, Management, Markos P, Murat-Susic S, Omerza L, Pulanic R, Rustemovic N, surgical intervention
Gabapentin can significantly improve dystonia severity and quality of life in children
Neuronal Ceroid Lipofuscinosis and Associated Sleep Abnormalities
Assessment of impaired coordination between respiration and deglutition in children and young adults with ataxia telangiectasia
Tags: 2016, ataxia telangectasia, cerebral-palsy, characteristics, Crawford T O, Developmental Medicine and Child Neurology, Disease, dynamics, Dysphagia, expiratory patterns of peri-deglutitive airflow, feeding difficulties, He X M, Lederman H M, Lefton-Greif M A, Management, neurodegeneration, Neurosciences & Neurology, Patterns, Pediatrics, Perlman A L, pharyngeal, Trajectory
Cornelia de Lange Syndrome: Correlation of Brain MRI Findings With Behavioral Assessment
Tags: 2016, aberrant behavior, American Journal of Medical Genetics Part C - Seminars in Medical Genetics, Autism spectrum disorder, Behavior, behavioral problems, Brain, characteristics, Checklist, Clemens J, Cornelia de Lange syndrome, De Lange syndrome, functional connectivity, Genetics & Heredity, Grados M A, hypoplasia, INDIVIDUALS, Kimball A, Kliewer M A, Kline A D, Lal T R R, Lopes T, mental-retardation, MRI, mutations, neuroanatomy, nipped-b, O'Connor J, Phenotype, Rebsamen S L, Trajectory
Effective treatment of spasticity using dronabinol in pediatric palliative care
A double-blind, placebo-controlled, crossover trial of the selective dopamine D1 receptor antagonist ecopipam in patients with Lesch-Nyhan disease
Behavioural and emotional problems, intellectual impairment and health-related quality of life in patients with organic acidurias and urea cycle disorders
Tags: 2016, alertness, Baric I, Baumgartner M R, behavioral problems, bowel incontinence, Burgard P, characteristics, Child Preschool, emotional problems, Emotions, feeding difficulties, Female, Garcia-Cazorla A, Glahn E M, Gleich F, Haege G, Humans, Intellectual Disability/etiology/metabolism, Jamiolkowski D, Journal Of Inherited Metabolic Disease, Kolker S, Male, Mental Disorders/etiology/metabolism, Metabolic Diseases/complications/metabolism, Metabolism Inborn Errors/complications/metabolism, Muhlhausen C, Ornithine Carbamoyltransferase Deficiency Disease/complications/metabolism, Quality Of Life, sleep disturbance, Trajectory, Urea Cycle Disorders Inborn/complications/metabolism, urinary incontinence, Zeman J
The Incidence and Evolution of Parkinsonian Rigidity in Rett Syndrome: A Pilot Study
Tags: 2016, 5 hydroxyindoleacetic acid, Adolescent, Adult, Age, ankle, Article, Barrowman N, Canadian Journal of Neurological Sciences, Cerebrospinal Fluid, characteristics, Child, Cohort Analysis, Cross-sectional Study, Disease Severity, Dopamine, Dystonia, Female, genetic susceptibility, homovanillic acid, homovanillic acid/ec [Endogenous Compound], Human, Humphreys P, hva, Incidence, Major Clinical Study, mecp2, methyl CpG binding protein 2, methyl CpG binding protein 2/ec [Endogenous Compound], missense mutation, mobilization, muscle rigidity, muscle tone, musculoskeletal disease assessment, neck, parkinsonism, Pharmacokinetics, Pilot Study, Priority Journal, Prospective Study, Quantitative Study, Rett syndrome, Rett syndrome rigidity distribution score, rigidity, scoring system, Speech, tone and motor problems, Trajectory, walking difficulty
A Pilot Study of the Association of Markers of Cholesterol Synthesis with Disturbed Sleep in Smith-Lemli-Opitz Syndrome
Sleep disturbance in Mowat-Wilson syndrome
Tags: 0 (Homeodomain Proteins), 0 (Repressor Proteins), 0 (ZEB2 protein human), 2016, Adolescent, Adult, American Journal of Medical Genetics Part A, Australia, Behavior Rating Scale, characteristics, Child, Child Preschool, Einfeld S, Evans E, Facies, Female, Gene Expression, Hirschsprung Disease/co [Complications], Hirschsprung Disease/di [Diagnosis], Hirschsprung Disease/ge [Genetics], Hirschsprung Disease/pp [Physiopathology], Homeodomain Proteins/ge [Genetics], Humans, Intellectual Disability/co [Complications], Intellectual Disability/di [Diagnosis], Intellectual Disability/ge [Genetics], Intellectual Disability/pp [Physiopathology], Male, Microcephaly/co [Complications], Microcephaly/di [Diagnosis], Microcephaly/ge [Genetics], Microcephaly/pp [Physiopathology], Middle Aged, Mowat D, Mowat-Wilson syndrome, Mutation, Repressor Proteins/ge [Genetics], Severity Of Illness Index, sleep disturbance/disorders, Sleep Initiation and Maintenance Disorders/co [Complications], Sleep Initiation and Maintenance Disorders/di [Diagnosis], Sleep Initiation and Maintenance Disorders/ge [Genetics], Sleep Initiation and Maintenance Disorders/pp [Physiopathology], Surveys And Questionnaires, Trajectory, Wilson M
Validating the Rett Syndrome Gross Motor Scale
Direct Observation of the Behaviour of Females with Rett Syndrome
Determinants of sleep disturbances in Rett syndrome: Novel findings in relation to genotype
Tags: 0 (Methyl-CpG-Binding Protein 2), 2016, Adolescent, Adult, American Journal of Medical Genetics Part A, Anderson B, Boban S, characteristics, Child, Child Preschool, Downs J, Epilepsy/di [diagnosis], Epilepsy/ge [Genetics], Epstein A, Genetic Association Studies, Genotype, Humans, Infant, Infant Newborn, Leonard H, Methyl-CpG-Binding Protein 2/ge [Genetics], Middle Aged, Murphy N, Mutation, Phenotype, Rett syndrome, Rett Syndrome/di [Diagnosis], Rett Syndrome/ge [Genetics], Rett Syndrome/pp [Physiopathology], Severity Of Illness Index, sleep disturbance/disorders, Sleep Wake Disorders/di [Diagnosis], Sleep Wake Disorders/ge [Genetics], Trajectory, Wong K, Young Adult
Diagnosis and Management of Drooling in Children With Progressive Dystonia: A Case Series of Patients With MEGDEL Syndrome
Tags: 2016, adenotonsillectomy, advice to interrupt tongue protrusion, antireflux medication, bilateral submandibular gland excision, Blommaert D, Erasmus C E, feeding advice, feeding difficulties, Hoogen F J A van den, Journal of Child Neurology, MEGDEL syndrome, parotid duct ligation, pharmacological intervention, surgical intervention, van Hulst K, Wortmann S B
Deep Brain Stimulation in Rare Inherited Dystonias
Tags: 2016, Adolescent, Adult, Aged, Aquino C C, Article, ataxia telangiectasia, ataxia telangiectasia/di [Diagnosis], ataxia telangiectasia/dt [Drug Therapy], atypical dopa responsive dystonia/di [Diagnosis], atypical dopa responsive dystonia/dt [Drug Therapy], Baclofen/dt [drug Therapy], Beaulieu-Boire I, benzodiazepine derivative/dt [Drug Therapy], Brain Depth Stimulation, Brain Stimulation, Burke Fahn Marsden Dystonia Rating Scale, cerebellar ataxia/di [Diagnosis], cerebellar ataxia/dt [Drug Therapy], Child, chorea/di [Diagnosis], chorea/dt [Drug Therapy], Clinical Article, clinical assessment, Clinical Effectiveness, clobazam/dt [Drug Therapy], clonazepam/dt [Drug Therapy], deep brain stimulation, diazepam/dt [Drug Therapy], disease duration, Disease Severity, Dystonia, dystonia/di [Diagnosis], dystonia/dt [Drug Therapy], Dystonic Disorder/su [surgery], dystonic disorder/th [Therapy], entacapone/cb [Drug Combination], entacapone/dt [Drug Therapy], escitalopram/dt [Drug Therapy], extrapyramidal syndrome/di [Diagnosis], extrapyramidal syndrome/dt [Drug Therapy], Fallis M, Fasano A, Follow Up, gabapentin/dt [Drug Therapy], haloperidol/dt [Drug Therapy], Hodaie M, Human, Inherited dystonia, Kalia S K, Lang A E, levodopa/dt [Drug Therapy], lorazepam/dt [Drug Therapy], Lozano A, MCM deficiency, methylmalonic aciduria/di [Diagnosis], methylmalonic aciduria/dt [Drug Therapy], Middle Aged, mirtazapine/dt [Drug Therapy], Moro E, motor dysfunction assessment, NCL, Nemaline myopathy, nemaline myopathy/di [Diagnosis], nemaline myopathy/dt [Drug Therapy], neuronal ceroid lipofuscinosis/di [Diagnosis], neuronal ceroid lipofuscinosis/dt [Drug Therapy], olanzapine/dt [Drug Therapy], outcome assessment, Phenotype, Poon Y Y, pramipexole/cb [Drug Combination], pramipexole/dt [Drug Therapy], Preoperative Care, Priority Journal, Rating Scale, risperidone/dt [Drug Therapy], School Child, selegiline/cb [Drug Combination], selegiline/dt [Drug Therapy], Surgery, surgical intervention, tetrabenazine/dt [Drug Therapy], therapy effect, time to treatment, tizanidine/dt [Drug Therapy], tone and motor problems, trazodone/dt [Drug Therapy], Treatment, trihexyphenidyl/cb [Drug Combination], trihexyphenidyl/dt [Drug Therapy], Trisomy/di [diagnosis], trisomy/dt [Drug Therapy], Wilson disease/di [Diagnosis], Wilson disease/dt [Drug Therapy], woodhouse sakati syndrome/di [Diagnosis], woodhouse sakati syndrome/dt [Drug Therapy], x trisomy/di [Diagnosis], x trisomy/dt [Drug Therapy]
Lower Urinary Tract Symptoms and Incontinence in Children with Pompe Disease
Temporal and spatial gait parameters in children with Cri du Chat Syndrome under single and dual task conditions
Tags: 2016, Abbruzzese L D, Aubuchon M, characteristics, Children, concurrent task, Cri du Chat Syndrome, Dual-task, Gait, Gait & Posture, motor, Neurosciences & Neurology, older-adults, Orthopedics, parkinsons-disease, performance, Rao A K, Salazar R, Sport Sciences, tone and motor problems, Trajectory, Walking
Parents of children diagnosed with cancer: work situation and sick leave, a five-year post end-of-treatment or a child's death follow-up study
Tags: 2016, Acta Oncologica, Adolescent, Adult, Bereavement, Cernvall M, Child, Child Preschool, Fathers/psychology/statistics & numerical data, Female, Follow-up Studies, Hoven E, Humans, Infant, Infant Newborn, Ljungman G, Ljungman L, Male, Mothers/psychology/statistics & numerical data, Neoplasms/economics/mortality/psychology/therapy, Oncology 2018 List, Sick Leave/statistics & numerical data, Survival Rate, Survivors, Sweden, Treatment Outcome, von Essen L, Wikman A
Spirituality among parents of children with cancer at AUBMC
Tags: 2016, cancer center, Cancer Nursing, Caregiver, Child, Childhood Cancer, Clinical Article, conference abstract, Developing World 2018 List, Doumit MA, Fear, Female, genetic transcription, Health Care Personnel, Human, Lebanon, Majdalani M, Male, Palliative Therapy, Powerlessness, Rahi A, Religion, Saab R, Semi Structured Interview, social needs, Spiritual Care
Depressive symptoms in mothers after perinatal and early infant loss in rural Bangladesh: a population-based study
Tags: 2016, Adolescent, Adult, Ali H, Annals of Epidemiology, Bangladesh, Bangladesh/epidemiology, Christian P, Cohort Studies, Databases Factual, Depression/ epidemiology/etiology, Depressive symptoms, Developing Countries, Developing World 2018 List, Female, Humans, Incidence, Infant, Infant Newborn, Infant Mortality, Klemm R, Labrique A, Maternal Health, Mehra S, Mental Health, Mothers/ Psychology, Needs Assessment, Neonatal Death, Perinatal Mortality/trends, Postpartum Period, Pregnancy, Rashid M, Retrospective Studies, Risk Assessment, Rural Population, Sakyi K, Stillbirth, Stillbirth/ ethnology, Strobino DM, Surkan PJ, Ullah B, West KP, Wu L, Young Adult
End-of-Life Care for Hispanic Children: A Study of California Medicaid Beneficiaries
Tags: 2016, Adolescent, California, Cardiovascular Diseases/mo [Mortality], Child, Congenital Abnormalities/mo [Mortality], Delivery of Health Care, Emergency Service, Female, Health Services Accessibility, Hispanic Americans, Hispanic Health Care International, Hospice Care/ut [Utilization], Hospices/ut [Utilization], Hospital/ut [Utilization], Hospitalization, Humans, Infant, Lindley LC, Male, Medicaid, Neoplasms/mo [mortality], October 2018 List, Palliative Care/ut [Utilization], Policy, Preschool, September 2018 List, Terminal Care/mt [methods], Trujillo LV, United States, Young Adult
Challenges and 'obstacles': reframing our perspective on the transition into adulthood for young people with life-limiting and life-threatening conditions
Early neurodevelopmental outcomes of extremely preterm infants
Tags: 2016, Adhd, Biomedical Research, Brain/embryology/ physiopathology, Cerebral Palsy, Developmental Disabilities/etiology/ physiopathology, Diseases/ physiopathology, Extremely Premature/growth & development/physiology/psychology, Fetal Organ Maturity, Hintz SR, Humans, Infant, Intellectual Impairment, intraventricular hemorrhage, March 2018 List, Neonatology, Nervous System Diseases/etiology/ physiopathology, neurodevelopment, Neurodevelopmental Outcomes, Newborn, Premature, preterm birth, Risk Factors, Rogers EE, Seminars in Perinatology, sensory impairment, Survival Rate/trends, Very Low Birth Weight/growth & development/physiology/psychology, white matter injury
Pediatric out-of-hospital deaths following hospital discharge: a mixed-methods study
Tags: 2016, African Health Sciences, Ansermino JM, Caregivers/psychology, Child, Child Mortality, Communicable Diseases/ mortality, Educational Status, English L, Female, Health Services Accessibility/ statistics & numerical data, Humans, Infant, Infant Mortality, infectious diseas, Kabakyenga J, Kissoon N, Kiwanuka J, Kumbakumba E, Larson CP, Length Of Stay, Logistic Models, Male, March 2018 List, Patient Acceptance of Health Care/psychology, Patient Discharge/ statistics & numerical data, Pediatrics, post-discharge mortality, Preschool, Qualitative interviews, Singer J, Time Factors, uganda, Uganda/epidemiology, Water Supply, Wiens MO, Wong H
Recruiting bereaved parents for research after infant death in the neonatal intensive care unit
Tags: 2016, Adult, Applied Nursing Research, Bakitas M, Bereaved Parents, Bereavement, Christian BJ, Currie ER, Humans, Infant, Infant Death, Intensive Care Units, March 2018 List, Meneses K, Neonatal, Neonatal Intensive Care Unit, Newborn, Parents/ Psychology, Qualitative Research, Recruitment, Roche C, Sensitive topic
Opinions of members of the National Civil (Family Proceedings) and Criminal Courts in withholding or withdrawing of life support situations in pediatrics
Tags: 2016, Archivos Argentinos De Pediatria, Argentina, Attitude To Death, Child, Ciruzzi MS, Cross-sectional Studies, Decision-making, Ethics, Garcia HO, Health Care Surveys, Humans, Ledesma F, Legislation And Jurisprudence, Life Support Care/ legislation & jurisprudence, March 2018 List, Menendez C, Pediatric Intensive Care Unit, Pediatrics/ legislation & jurisprudence, Roitman AJ, Selandari JO, Withholding Treatment, Withholding Treatment/ legislation & jurisprudence
Development and validation of the Communicating with Family about Brain Death Scale
Tags: 2016, Adolescent, Adult, Attitudes, Brain Death/ diagnosis, brain-dead organ donation, Bresnahan M, communicating with family about brain death, Communication, Cross-sectional Studies, Decision Making, End-of-life Decision Making, Factor Analysis, Family, Female, first-person organ donation consent laws, Health Knowledge, Humans, Journal Of Health Psychology, Male, March 2018 List, Middle Aged, misconceptions about brain death, Practice, Reproducibility of Results, statistical, Tissue and Organ Procurement, Young Adult, Zhuang J