Browse Items (57 total)
- Tags: Priority Journal
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
Advance care planning for adolescent patients with life-threatening neurological conditions: A survey of Japanese paediatric neurologists
Tags: 2017, Adult, Advance Care Planning, Article, Artificial Ventilation, BMJ Paediatrics Open, Cross-sectional Study, do not resuscitate order, Family, Female, Health Care Survey, hematologist, Human, Japan, Kizawa Y, living will, Male, Middle Aged, Neurologic Disease, neurologist, November 2018 List, Pediatrician, Priority Journal, Prognosis, Shintaku H, Terminal Care, Yotani N
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
Guidance on forgoing life-sustaining medical treatment
Tags: 2017, Apparent Life Threatening Event/th [therapy], Article, Awareness, Boss RD, Caregiver, Carter BS, Child Abuse, Child Care, Christian CW, Clinical Decision Making, Comatose Patient, Consensus, Consultation, Critical Illness/th [therapy], Davies D, Death, Death By Neurologic Criteria, Dell ML, Developmental Disorder/th [therapy], Diekema DS, Disease Burden, Disease Course, Elster N, Ethical Decision Making, Extremely Low Gestational Age, Family Decision Making, Family Stress, Feudtner C, Flaherty EG, Fortson BL, Foster Care, Gavril AR, Gestational Age, Goal Attainment, Guinn-Jones M, Hauer JM, Health Belief, High Risk Population, Human, Humphrey LM, Hurley TP, Hydration, Idzerda SM, Imaizumi S, Imminent Death, Informed Consent, Intensive Care, Interpersonal Communication, Katz AL, Klick J, Klipstein S, Laskey A, Laventhal N, Legal Aspect, Legano LA, Leventhal JM, Life-sustaining Medical Treatment, Linebarger JS, Lord B, MacAuley RC, MacMillan H, Medical Ethics, Medical Expert, Medical Information, Medical Procedures, Medical Specialist, Medically Administered Nutrition And Hydration, Moon MR, Neglect, Neurologic Disease/di [diagnosis], November 2017 List, Nutrition, Okun AL, Opel DJ, Oxygenation, Pain/th [therapy], Palliative Therapy, Parker S, Patient Care Planning, Pediatrician, Pediatrics, Practice Guideline, Priority Journal, Prognosis, Quality Of Life, Resuscitation, Rivera F, shared decision making, Social Support, Spiritual Care, Statter MB, Stedt E, Survival, Teamwork, Terminal Care, Tissue Perfusion, Uncertain Prognosis, Weise KL
Palliative Care
Tags: 103-90-2 (paracetamol), 1095-90-5 (methadone), 125-56-4 (methadone), 12794-10-4 (benzodiazepine), 137-58-6 (lidocaine), 2017, 23142-53-2 (methadone), 24847-67-4 (lidocaine), 297-88-1 (methadone), 437-38-7 (fentanyl), 53663-61-9 (opiate), 56934-02-2 (lidocaine), 60142-96-3 (gabapentin), 73-78-9 (lidocaine), 76-99-3 (methadone), 8002-76-4 (opiate), 8008-60-4 (opiate), Acute Stress Disorder, Alcohol Consumption, Anticonvulsive Agent, Appetite, Benzodiazepine, Brill P, Connelly E, Corticosteroid, Distress Syndrome, Dyspnea, Fentanyl, Gabapentin, Hair Loss, Health Care Personnel, Health Care System, Hospital, Howk T, Human, Intensive Care Unit, Lidocaine, Major Depression, Medical Staff, Methadone, Mortality, Nausea And Vomiting, Neoplasm, November 2017 List, Obesity, Opiate, Palliative Therapy, Paracetamol, Paralysis, Patient Care Planning, Pediatric Oncology, Pillai R, Postovsky S, Priority Journal, Prostaglandin/ec [endogenous Compound], Quality Of Life, Tracheostomy, Wasilewski-Masker K, Wrammert KC
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
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
Comparison of treatment modalities in syndromic children with Obstructive Sleep Apnea-A randomized cohort study
Tags: 2014, adenotonsillectomy, apnea hypopnea index, Article, Arumugam S V, breathing difficulties, Child, Clinical Effectiveness, Continuous Positive Airway Pressure, Controlled Study, CPAP device, Down Syndrome, Epworth sleepiness scale, ess-c, Female, Follow Up, Human, International Journal of Pediatric Otorhinolaryngology, Kameswaran M, Major Clinical Study, Male, MPSI, MPSII, MPSIII, MPSIIIA, MPSIIIB, MPSVI, MPSVII, Mucopolysaccharidoses, Mucopolysaccharidosis, Murali S, osa-18, outcome assessment, Paramasivan V K, Pediatric obstructive sleep apnea, physical interventions, positive end expiratory pressure, Priority Journal, Quality Of Life, radiofrequency ablation device, Randomized Controlled Trial, sleep disordered breathing/su [Surgery], sleep disordered breathing/th [Therapy], Sudarsan S S, surgical interventions, Treatment Outcome
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
Autism traits in children and adolescents with Cornelia de Lange syndrome
Tags: 2014, Aberrant Behavior Checklist, adaptive behavior, Adolescent, Adult, Age, American Journal of Medical Genetics Part A, Article, Autism, behavior disorder, Behavioral phenotype, behavioral problems, characteristics, Checklist, Child, Childhood Autism Rating Scale, Clark B, Clinical Article, Communication, communication disorder, compulsion, Cornelia de Lange syndrome, daily life activity, De Lange syndrome, Diagnosis, Disease Severity, Emotion, Female, Grados M A, Human, hyperactivity, Intellectual Impairment, Interpersonal Communication, Irritability, Kline A D, Landy-Schmitt C, Language, lethargy, limb, maladjustment, Male, Phenotype, Priority Journal, psychological rating scale, Rating Scale, Repetitive behaviors, rigidity, Skill, social cognition, Socialization, Specht M, Srivastava S, stereotypy, Trajectory, Verbal Communication, Vineland Adaptive Behaviors Scales
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
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
Gait, Balance, and Coordination Impairments in Niemann Pick Disease, Type C1
Tags: 2 hydroxypropyl beta cyclodextrin, 2018, 94035-02-6 (2 hydroxypropyl beta cyclodextrin), Adolescent, Adult, Alter K, Article, balance impairment, body equilibrium, case control study, characteristics, Child, Clinical Article, clinical evaluation, Comparative Study, coordination disorder, disease severity assessment, Farhat N, Female, gait disorder, Human, Human Development, intervention study, Journal of Child Neurology, Keener L A, Male, molecular stability, motion analysis system, Neurologic Examination, Niemann Pick disease, NIH NPC Neurologic Severity Scale, NPC, outcome assessment, performance, Porter F, Preschool Child, Priority Journal, Research, Retrospective Study, Sansare A, School Child, scoring system, spatiotemporal analysis, stabilography, Stanley C, tone and motor problems, Trajectory, Upper limb, vts 270, Young Adult, Zampieri C
Palliative care in Swiss pediatric oncology settings: a retrospective analysis of medical records
Tags: 2707, Acheson E, Adolescent, Ansari M, Article, Brazzola P, Cancer Mortality, Cancer Palliative Therapy, central nervous system tumor/th [Therapy], Child, childhood cancer/th [Therapy], Clinical Decision Making, diagnosis related group, Elger B S, Female, Human, Kuhne T, leukemia/th [Therapy], Major Clinical Study, Male, Medical Record, Niggli F, Oncology 2019 List, Pacurari N, Priority Journal, Retrospective Study, Rost M, Supportive Care In Cancer, Switzerland, treatment duration, Wangmo T
Parental perceptions of forgoing artificial nutrition and hydration during end-of-life care
Tags: 2013, Article, Artificial Feeding, Child Care, Child Death, Clinical Practice, Concept Formation, Controlled Study, Decision Making, Female, Human, Hydration, Male, March 2018 List, Newman C, Parental Attitude, Pediatrics, Personal Experience, Priority Journal, Qualitative Research, Quality Of Life, Rapoport A, Religion, Rugg M, Satisfaction, Shaheed J, Steele R, Terminal Care
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
Clinical practice and outcomes of palliative radiation therapy in pediatric oncology patients: An international comparison of experiences from two distinct countries and health care systems
Tags: 2019, Alcorn S R, Anorexia, Article, bradycardia, Brain Metastasis, Cancer Palliative Therapy, cancer radiotherapy, Cancer Survival, Chen M J, Chen Q, Child, Childhood Cancer/rt [radiotherapy], Clinical Outcome, Clinical Practice, Cohort Analysis, Figueiredo M L S, Follow Up, Human, Ladra M, leukemia/rt [Radiotherapy], lymphoma/rt [Radiotherapy], Major Clinical Study, mucosa inflammation, neuroblastoma/rt [Radiotherapy], Oncology 2019 List, Opiate/dt [drug Therapy], opiate/pv [Special Situation for Pharmacovigilance], osteosarcoma/rt [Radiotherapy], Pain/dt [drug Therapy], Palliative radiation therapy, Palliative Therapy, pediatric patient, Pediatric radiation therapy, Preschool Child, Priority Journal, radiation dermatitis, Radiation Dose Fractionation, radiation induced neoplasm, Radiotherapy and Oncology, Rao A D, rectum hemorrhage, Sehgal S, Terezakis S A, Treatment Outcome, treatment response, tumor growth, Villar R, Yegya-Raman N
Fatigue and depression in children with demyelinating disorders
Tags: 2013, acquired demyelinating syndromes, acute disseminated encephalomyelitis, Adolescent, alertness, Article, Benedict R H B, Canada, characteristics, Child, Child Behavior, Childhood Disease, Clinical Article, Cohort Analysis, Comorbidity, Controlled Study, Cross-sectional Study, demyelinating disease, demyelinating disorders, Depression, disease duration, Epidemiology, Fatigue, Female, Health Survey, Human, Journal of Child Neurology, Male, Mood, Multiple Sclerosis, Parrish J B, Priority Journal, psychological aspect, School Child, Self Report, Sleep, Smerbeck A, Therapy, Trajectory, Weinstock-Guttman B, Yeh E A
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
Care Provider Behaviors That Shape Parent Identity as a "Good Parent" to Their Seriously Ill Child
Tags: 2021, Article, August List 2041, care behavior, Child, Child Parent Relation, Demographics, encouragement, Europe, Female, Health Belief, Hinds PS, Hospice, Hospital Admission, Human, Interpersonal Communication, legal guardian, Lord B, Male, Medical Decision Making, Neumann ML, Nurse, Palliative Medicine Reports, Palliative Therapy, Parent, Patient Comfort, Physician, Priority Journal, Quality Of Life, reassurance, United States, Voice, Weaver MS, Wiener L
A survey-based study identifies common but unrecognized symptoms in a large series of juvenile Huntington's disease
Tags: 2017, Adolescent, Adult, Article, auditory hallucination, CAG repeat, characteristics, Child, Clinical Article, Controlled Study, Epping E, Espe-Pfeifer P, Female, Health Survey, Hudgell D, Human, Huntington chorea, juvenile, Juvenile Huntington disease, leg pain, Male, Martin E, Mathews K, Moser A D, Nance M, Neurodegenerative Disease Management, Nopoulos P, Pain, Priority Journal, pruritus, psychosis, Quarrell O, skin irritation, sleep disorder, sleep disturbance/disorders, tic, Trajectory, visual hallucination, Zhorne L
Feed-induced Dystonias in Children with Severe Central Nervous System Disorders
Tags: 1134-47-0 (baclofen), 2017, acquired brain injury, Adolescent, Article, Baclofen/dt [drug Therapy], baclofen/tl [Intrathecal Drug Administration], Campbell D I, Case Study, central nervous system disease, Cerebral Palsy, Child, Clinical Article, Constipation, Dystonia, dystonia/dt [Drug Therapy], feed induced dystonia, feed induced dystonia/dt [Drug Therapy], feeding difficulties, Female, Gastroesophageal Reflux, Gastroscopy, GERD, Human, Hydrocephalus, Hyperglycinemia, Infant, infantile spasm, intestinal dysmotility, intestine motility, Intestine Obstruction, Journal Of Pediatric Gastroenterology And Nutrition, Male, microcephaly, Mordekar S R, motor dysfunction, MPSIII, onset age, Parenteral Nutrition, Percutaneous Endoscopic Gastrostomy, peristalsis, pharmacologic intervention, Practice Guideline, Preschool Child, Priority Journal, reflux esophagitis, Retrospective Study, Rett syndrome, Sanfilippo syndrome, School Child, tone and motor problems, total parenteral nutrition, Velayudhan M, West syndrome
Autonomic breathing abnormalities in Rett syndrome: Caregiver perspectives in an international database study
Tags: 2017, abdominal bloating, Adult, Article, autonomic dysfunction, bloating, breath holding, breath-holding, breathing difficulties, breathing disorder, Breathing disorders, breathing pattern, Caregiver, characteristics, Child, Data Base, Developmental Disability, Downs J, Epstein A, Female, Genotype, Heyworth J, Human, hyperventilation, International database, Journal of Neurodevelopmental Disorders, Leonard H, MacKay J, Male, mecp2, Mutation, Noninvasive Ventilation, onset age, oxygen, Priority Journal, Questionnaire, Rare disorder, rebreathing, Rett syndrome, School Child, Trajectory, Wong K
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
All-cause mortality rates and home deaths decreased in children with life-limiting diagnoses in Denmark between 1994 and 2014
Tags: 2018, accident, Acta Paediatrica, International Journal of Paediatrics, Adolescent, Adult, all cause mortality, Article, automutilation, Child, Childhood Mortality, Chromosome Aberration, Congenital Malformation, Death, Denmark, Ekholm O, Epidemiology, Home, Human, Infant, Infant Mortality, International Classification of Diseases, Lykke C, Neoplasm, November 2018 List, Olsen M, Perinatal Death, Priority Journal, Schmiegelow K, Sjogren P
Moral distress in PICU and neonatal ICU practitioners: A cross-sectional evaluation
Tags: 2017, Adult, Article, Burnout, Correlation Analysis, Cross-sectional Study, Demography, Distress Syndrome, Dryden-Palmer KD, Female, Gibbons C, health practitioner, Hospital care, Human, Intensive Care, January 2018 List, Larson CP, linear regression analysis, Major Clinical Study, Male, Maslach Burnout Inventory Depersonalization Subscale, Middle Aged, Mishel Parent Perception of Uncertainty Scale, Morality, Neonatal Intensive Care Unit, Nurse, outcome assessment, Parshuram CS, Pediatric Critical Care Medicine, Pediatric Intensive Care Unit, Physician, Priority Journal, Prognosis, Questionnaire, Rating Scale, Revised Moral Distress Scale, Terminal Care, tertiary care center, Uncertainty, Work, Young Adult
Pediatric leukodystrophies: The role of the otolaryngologist
Tags: 1309378-01-5 (botulinum toxin A), 1638949-86-6 (botulinum toxin A), 1800016-51-6 (botulinum toxin A), 2017, 93384-43-1 (botulinum toxin A), Adolescent, Adult, Aicardi-Goutières syndrome, anamnesis, Article, aspiration pneumonia, Assessment, Bernard G, botulinum toxin A/dt [Drug Therapy], breathing difficulties, characteristics, Child, Clinical Article, Cohort Analysis, Comorbidity, Daniel S J, Drool, drooling, Dysphagia, feeding difficulties, head and neck disease, hearing impairment, Human, hypersalivation/su [Surgery], International Journal of Pediatric Otorhinolaryngology, Kay-Rivest E, Khendek L, Krabbe disease, Leukodystrophy, leukodystrophy/dt [Drug Therapy], nose feeding, otolaryngologist, Pelizaeus-Merzbacher disease, physical examination, Physician Attitude, Priority Journal, Quality Of Life, quality of life assessment, Questionnaire, sleep disturbance, stomach tube, Trajectory, x-linked adreno-leukodystrophy
Disparities in the intensity of end-of-life care for children with cancer
Tags: 2017, Adolescent, Adult, Alvarez E, Article, Bhatia S, Cancer Chemotherapy, Caucasian, Chamberlain LJ, Child, Childhood Cancer, Childhood Mortality, Cohort Analysis, Controlled Study, Demography, Female, Health Care Disparity, Hematologic Malignancy, Hemodialysis, Hospital Admission, Hospital Mortality, Human, Infant, Intensive Care Unit, Intubation, Johnston EE, Major Clinical Study, Male, Newborn, Oncology 2017 List, Pediatrics, Population Research, Priority Journal, Resuscitation, Retrospective Study, Sanders L, Saynina O, Terminal Care
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
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
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
Intrathecal baclofen treatment an option in X-linked adrenoleukodystrophy
Tags: 1134-47-0 (baclofen), 1309378-01-5 (botulinum toxin A), 1638949-86-6 (botulinum toxin A), 1800016-51-6 (botulinum toxin A), 2018, 93384-43-1 (botulinum toxin A), Addison disease, adrenoleukodystrophy/dt [Drug Therapy], adrenoleukodystrophy/su [Surgery], Article, baclofen, Baclofen/dt [drug Therapy], baclofen/po [Oral Drug Administration], baclofen/tl [Intrathecal Drug Administration], balance disorder, behavior change, bladder dysfunction, botulinum toxin A, Case Report, Child, Clinical Article, clinical examination, clonus, diplopia, drug dose increase, Dystonia, Ehrstedt C, European Journal of Paediatric Neurology, Fatigue, hearing disorder, Hjartarson H T, Human, hyperpigmentation, intrathecal baclofen, intrathecal pump, Leukodystrophy, limited mobility, Male, Pain, pharmacologic interventions, Priority Journal, Quality Of Life, Range of Motion, School Child, Spasticity, strabismus, Tedroff K, tone and motor problems, urinary catheter, visual disorder, X chromosome linked disorder/dt [Drug Therapy], X chromosome linked disorder/su [Surgery], X-linked adrenoleukodystrophy
Balloon dilatation in esophageal strictures in epidermolysis bullosa and the role of anesthesia
Tags: 2017, Adolescent, Adult, Anesthesia, Article, Ates U, Balloon dilatation, Can O S, Child, Clinical Article, Clinical Effectiveness, colon interposition, digestive endoscope, Dindar H, Diseases of the Esophagus, Dysphagia, endoscopic balloon dilatation, epidermolysis bullosa, Ergun E, esophagus balloon, esophagus perforation, esophagus stenosis/co [Complication], esophagus stenosis/th [Therapy], feeding difficulties, Female, Gastrostomy, Gollu G, Human, Male, Patient Safety, Preschool Child, Priority Journal, Retrospective Study, School Child, surgical intervention, Young Adult
Four Steps To Eliminate Or Reduce Pain In Children Caused By Needles (part 1)
Tags: 2017, Acupuncture, Analgesia, April 2017 List, Aromatherapy, Child, Chronic Pain/co [complication], Chronic Pain/th [therapy], Clinical Study, Controlled Study, Friedrichsdorf SJ, Human, Hypnosis, Injection Pain/co [complication], Injection Pain/th [therapy], Integrative Medicine, Minnesota, Needle, Needle/am [adverse Device Effect], Note, Pain Clinic, Pain Management, Pain/co [complication], Pain/pc [prevention], Pain/th [therapy], Palliative Therapy, Priority Journal, Self Care, Treatment Planning, Vaccination
Access to paediatric palliative care in children and adolescents with complex chronic conditions: A retrospective hospital-based study in Brussels, Belgium
Tags: 2019, Adolescent, Article, Aujoulat I, Belgium, BMJ Paediatrics Open, Bouckenaere D, Brichard B, Cardiovascular Disease, Child, Chronic Disease, complex chronic condition, congenital disorder, Data Base, De Clercq E, December 2019 List, Female, Fonteyne C, Friedel M, gastrointestinal disease, Genetic Disorder, Gilson A, groups by age, Guillet A, Health Care Access, hematologic disease, Hospital, Hospital Admission, hospitalized adolescent, Hospitalized Child, Human, Icd-9, immune deficiency, Infant, Lahaye M, Length Of Stay, Mahboub A, Major Clinical Study, Male, Malignant Neoplasm, Metabolic Disorder, Morbidity, Neurologic Disease, Newborn, Palliative Therapy, Patient Care, Patient Referral, pediatric patient, pediatric ward, Priority Journal, Respiratory Tract Disease, Retrospective Study, urinary tract disease, Wojcik T
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
Neonatal end-of-life care: A single-center NICU experience in Israel over a decade
Tags: 2013, adrenal insufficiency/ep [Epidemiology], anemia/ep [Epidemiology], Article, Bar-Oz B, brain edema/ep [Epidemiology], brain hemorrhage/ep [Epidemiology], Cause Of Death, Child Parent Relation, congenital malformation/ep [Epidemiology], Eventov-Friedman S, Gestational Age, Human, Incidence, Israel, Jerusalem, Kanevsky H, kidney failure/ep [Epidemiology], March 2018 List, Medical Decision Making, Middle East, necrotizing enterocolitis/ep [Epidemiology], Newborn, Newborn Care, Newborn Death, newborn hypoxia/ep [Epidemiology], Newborn Intensive Care, newborn mortality, newborn sepsis/ep [Epidemiology], Pediatrics, Practice Guideline, Prematurity, Priority Journal, Quality Of Life, Religion, respiratory failure/ep [Epidemiology], sepsis/ep [Epidemiology], shock/ep [Epidemiology], treatment duration
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