Browse Items (57 total)
- Tags: Priority Journal
Physicians' attitudes when faced with life-threatening events in children with severe neurological disabilities
Tags: 2019, Adult, Article, childhood disease/ep [Epidemiology], Clinical Decision Making, Cross-sectional Study, Developmental Neurorehabilitation, Disability, Emergency Ward, Female, Follow Up, Health Care Access, Human, Intensive Care, Likert scale, Major Clinical Study, Male, May 2019 List, neurologic disease/ep [Epidemiology], Newman C J, Noninvasive Ventilation, Palliative Therapy, Patient Care, Patient Comfort, Pediatric Rehabilitation, Personal Experience, Physician Attitude, Priority Journal, profound intellectual and multiple disability, rehabilitation center, Resuscitation, Risk, risk factor, Spinal Muscular Atrophy, Swiss, Terminal Care, Tracheostomy, Wosinski B
Polysomnographic recordings of respiratory disturbances in Rett syndrome
Tags: 1995, Adolescent, Aguigah G, Aksu F, apnea, breathing difficulties, Buschatz D, Case Report, characteristics, Conference Paper, Disorder of respiratory control, Female, Human, hyperventilation, hypocapnia, Journal of Sleep Research, Polygraphic recording, Polysomnography, Priority Journal, Respiratory Tract Disease, Rett syndrome, Rett Syndrome/di [Diagnosis], Schluter B, School Child, Trajectory, Trowitzsch E
Practice patterns of palliative radiation therapy in pediatric oncology patients in an international pediatric research consortium
Tags: 2017, Alcorn SR, Anesthesia, Article, Brain Metastasis, Cancer Patient, Chen MJ, Chen Q, Child, Childhood Cancer/rt [radiotherapy], Cone Beam Computed Tomography, Conformal Radiotherapy, Dieckmann K, Electron Therapy, Ependymoma, Ermoian RP, Ewing Sarcoma, Figueiredo MLS, Ford EC, Health Survey, Histopathology, Human, Intensity Modulated Radiation Therapy, Intestine Obstruction, Kobyzeva D, Ladra MM, Leukemia, Lymphoma, MacDonald SM, Major Clinical Study, Malignant Neoplasm, Medulloblastoma, Metastasis, Nechesnyuk AV, Neuroblastoma, Nilsson K, Oncology 2017 List, Osteosarcoma, Pain, Palliative Therapy, Pediatric Blood and Cancer, Primary Tumor, Priority Journal, Proton Therapy, Radiation Dose Fractionation, Radiosensitivity, Rao AD, Re-irradiation, Respiratory Tract Disease, Rhabdomyosarcoma, Spinal Cord Compression, Stereotactic Body Radiation Therapy, Stomach Distension, Terezakis SA, Villar RC, Winey BA
Preliminary Study of Neurodevelopmental Outcomes and Parenting Stress in Pediatric Mitochondrial Disease
Tags: 2017, Aggression, anxiety disorder/dm [Disease Management], Article, attention disturbance/dm [Disease Management], behavioral problems, brain atrophy/dm [Disease Management], characteristics, Child, Child Behavior, childhood disease/dm [Disease Management], Clinical Article, Comorbidity, daily life activity, delinquency, depression/dm [Disease Management], Disease Severity, drug resistant epilepsy/dm [Disease Management], drug resistant epilepsy/dr [Drug Resistance], Emotion, Eom S, Female, Human, intellectual impairment/dm [Disease Management], Intelligence, Intelligence Quotient, lactic acidosis/dm [Disease Management], Lee Y M, Leigh disease/dm [Disease Management], Leigh syndrome, Male, MELAS syndrome, MELAS syndrome/dm [Disease Management], mitochondrial disorders, muscle disease/dm [Disease Management], nervous system development, neuroimaging, nuclear magnetic resonance imaging, Parental Stress, Pediatric Neurology, postnatal depression/dm [Disease Management], Preschool Child, Priority Journal, problem behavior/dm [Disease Management], Prognosis, psychomotor development, Quality Of Life, sleep disorder/dm [Disease Management], social problem, somatization/dm [Disease Management], thinking impairment/dm [Disease Management], Trajectory
Procedural burden experienced by children with cancer during their terminal hospital admission
Tags: 2019, acute respiratory failure, Adolescent, amputation, Article, Artificial Ventilation, bone marrow biopsy, Bone Marrow Transplantation, brain ventricle peritoneum shunt, Cancer Palliative Therapy, Central Nervous System Tumor, central venous catheter, Child, Childhood Cancer, Cohort Analysis, Corkum K S, craniotomy, debridement, Disease Burden, excision, fasciotomy, Female, Heart Arrest, heart surgery, Hebal F N, Hospital Admission, Human, intestine resection, invasive procedure, Journal Of Pediatric Surgery, laparoscopy, Lautz T B, Length Of Stay, Leukemia, lobectomy, Major Clinical Study, Male, myringotomy, Oncology 2019 List, Ostomy, Pain, Priority Journal, public health insurance, Retrospective Study, Rowell E E, segmentectomy, Sepsis, spine fusion, Stem Cell Transplantation, Terminal Care, thoracoscopy, Thoracotomy, vascular access, ventriculostomy
Promoting adaptive behaviors by two girls with Rett syndrome through a microswitch-based program
Tags: 2013, adaptive behavior, Adolescent, Article, Assistive technology, Caffo A O, Case Report, Child Behavior, Female, hand washing, Happiness, Human, Indices of happiness, locomotion, Locomotor behavior, Microswitches, optic sensors, physical intervention, Priority Journal, Research In Autism Spectrum Disorders, Rett syndrome, School Child, Stasolla F, stereotyped movements, stereotypy, tone and motor problems, Wobble microswitch
Rapid whole-genome sequencing decreases infant morbidity and cost of hospitalization
Tags: 2018, acutely ill patient, Article, Bainbridge MN, Benson W, Cakici JA, Childhood Mortality, Chowdhury S, Clark MM, Clinical Article, Cohort Analysis, Controlled Study, Cost Control, diagnostic test accuracy study, Diagnostic Value, Dimmock D, Ding Y, Farnaes L, February 2019 List, Female, Friedman J, genetic screening, Gold JJ, Hildreth A, hospitalization cost, Human, Infant, infant disease/di [Diagnosis], infant disease/dm [Disease Management], Kaplan RH, Kingsmore SF, Kronick R, Male, mortality risk, Nahas S, NLJ Genomic Medicine, Palliative Therapy, Priority Journal, rapid whole genome sequencing, Retrospective Study, risk reduction, Sensitivity and Specificity, Sweeney NM, Veeraraghavan N, whole genome sequencing
Rett's syndrome: Characterization of respiratory patterns and sleep
Tags: 1987, abnormal respiratory problems, abnormal sleep patterns, Annals Of Neurology, ataxia, Autism, breathing difficulties, Central Nervous System, characteristics, Child, Dementia, Diagnosis, etiology, Frost Jr J D, Glaze D G, heredity, Human, hyperpnea, Major Clinical Study, Percy A K, Priority Journal, Respiratory System, Rett syndrome, Seizure, Sleep, sleep disturbance, Trajectory, Zoghbi H Y
Sleep abnormalities in untreated patients with mucopolysaccharidosis type VI
Tags: 2011, American Journal of Medical Genetics Part A, anamnesis, apnea, Article, Azevedo A C, Barrios P, breathing difficulties, characteristics, Child, Clinical Article, Clinical Feature, Controlled Study, Cross-sectional Study, Dalcin P, disease association, Disease Severity, Doppler echocardiography, Fagondes S, Female, Giugliani R, Glycosaminoglycans, Human, John A, Lysosomal storage diseases, lysosome storage disease, macroglossia, Male, Maroteaux Lamy syndrome, Menna-Barreto S, Morquio syndrome, MPSVI, Mucopolysaccharidosis, oxygen saturation, oxygen/ec [Endogenous Compound], physical examination, pigeon thorax, Polysomnography, Preschool Child, Prevalence, Priority Journal, Prospective Study, pulmonary hypertension, Schwartz I, Sleep apnea, sleep apnea syndrome/di [Diagnosis], sleep disorder, snoring, Trajectory, witnessed apnea
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
Teamwork and conflicts in paediatric end-of-life care
Tags: 2018, Acta Paediatrica, Conflict, conflict management, Coping Behavior, Editorial, Emotion, Health Care Personnel, Human, March 2018 List, Medical Decision Making, Nurse, Parental Attitude, Pediatrics, Physician, physiotherapist, Priority Journal, Psychologist, Teamwork, Terminal Care, Verhagen AAE
The Impact Of A Sibling's Life-limiting Genetic Condition On Adult Brothers And Sisters
Tags: 2017, Adult, American Journal of Medical Genetics Part A, Article, Brother, Brown E, Coad J, Coping Behavior, Family Attitude, Female, Franklin A, Genetic Disorder, Grief, Human, Male, Parental Attitude, Peer Group, Priority Journal, Psychological Resilience, Qualitative Analysis, September 2017 List, Sibling, Sibling Attitude, Sister, Structured Interview, Trisomy 13, Trisomy 18, Wellbeing
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
The timing and circumstances of the implementation of pediatric palliative care in Hungarian pediatric oncology
Tags: 2018, Adult, ambivalence, Article, Cancer Palliative Therapy, Child Death, Childhood Cancer, Cohort Analysis, constructive feedback, Data Analysis Software, Doctor Patient Relation, Eniko F, European Journal of Pediatrics, Exploratory Research, Family, Female, Hauser P, Hegedus K, Human, Hungarian (citizen), Hungary, Male, Nyiro J, Oncologist, Oncology 2018 List, Parent, Priority Journal, Psychologist, Structured Interview, Terminal Care, time to treatment, Zorgo S
Trisomy 18: A survey of opinions, attitudes, and practices of neonatologists
Tags: 2016, Adult, American Journal of Medical Genetics Part A, Article, Attitude Of Health Personnel, Attitude To Abortion, Biggio JR, Caucasian, Christian, Chromosomes Human Pair 18, Clinical Practice, Correlation Analysis, December 2017 List, Demography, Disease Management, Disease Severity, Edwards RK, Family, Female, Fetus Malformation, Health Care Surveys, Human, Humans, Intellectual Impairment, Jacobs AP, Male, Marriage, Medical Decision Making, Medical Society, Neonatologist, Neonatologists/px [psychology], Newborn Care, Normal Human, Outcome Assessment (health Care), Palliative Care, Palliative Therapy, Parental Attitude, Philips JB 3rd, Physician Attitude, Practice Patterns Physicians', Prenatal Diagnosis, Priority Journal, Race Difference, Resuscitation, Robin NH, Subramaniam A, Survival Rate, Tang Y, Trisomy 18, Trisomy/di [diagnosis], United States
Unrealistic parental expectations for cure in poor-prognosis childhood cancer
Tags: 2020, Article, Bagatell R, Baker J N, Cancer, Cancer Palliative Therapy, Cancer Prognosis, Cancer Recurrence, cancer risk, Child, Childhood Cancer, Clinical Decision Making, Cohn S L, Cohort Analysis, confidence interval, Controlled Study, Cronin A M, Diller L R, Expectation, Female, Glade Bender J, Granger M M, High Risk Population, Human, Interpersonal Communication, Levine A, Mack J W, Major Clinical Study, Male, Marachelian A, Medical Record, Neuroblastoma, Odds Ratio, Oncology 2020 List, parental behavior, Park J, Patient Care, pediatric patient, Priority Journal, Prospective Study, Quality Of Life, Questionnaire, Rosenberg A, Shusterman S, Taddei S, theoretical model, Twist C J, Uno H