Browse Items (57 total)
- Tags: Priority Journal
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
Helping parents prepare for their child's end of life: A retrospective survey of cancer-bereaved parents
Tags: 2020, Adolescent, Adult, Aged, Article, Battles H, Bedoya S Z, Bereavement, Caregiver, Child, childhood cancer/dm [Disease Management], Content Analysis, Emotion, Female, Gerhardt C A, health care need, Human, Infant, Interpersonal Communication, Mack J, Major Clinical Study, Male, Newborn, Nurse, Oncology 2020 List, open ended questionnaire, Parent, Pediatric Blood and Cancer, pediatric oncologist, pediatric patient, Priority Journal, Psycho-Oncology, Psychologist, Quality Of Life, quantitative analysis, Retrospective Study, social media, Social Support, Social Worker, support group, Tager J, Terminal Care, Thematic Analysis, time of death, Wiener L, worker
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
Pediatric oncology nursing research in low- and middle-income countries
Tags: 2020, Afungchwi G M, Alqudimat M R, alternative medicine, Burkitt lymphoma, cancer incidence, Cancer Survival, Caregiver, Caregiver Burden, caregiver burnout, Challinor J M, Cytotoxicity, Day S W, Developing World 2020 List, economic status, Fatigue, geographic distribution, gross national income, Health Care Personnel, high income country, Human, immune status, Impact of Events Scale, Infant Mortality, Kaposi sarcoma, lifestyle, low income country, malnutrition, Methodology, middle income country, nurse training, Nursing Care, Nursing Practice, nursing science, Nutrition, Pain, Palliative Therapy, Pediatric Oncology, pediatric oncology nursing, PostTraumatic Stress Disorder, Priority Journal, Quality Of Life, risk factor, Sepsis, Southeast Asian, Southern Europe, Stress, traditional medicine, treatment response
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
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
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
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
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
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
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
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
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
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
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
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
Mitochondrial capacity, muscle endurance, and low energy in friedreich ataxia
Tags: 2017, Adolescent, Adult, alertness, Article, Bossie H M, cellular subcellular and molecular biological phenomena and functions, characteristics, Child, Clinical Article, Comparative Study, Controlled Study, Cross-sectional Study, Disease Severity, electrostimulation, endurance, energy, Fatigue, Female, Friedreich ataxia, Godin Leisure Time Physical Activity Score, Human, Male, McCully K K, mechanomyography, mitochondrial capacity, Muscle and Nerve, muscle endurance, muscle exercise, myography, near infrared spectroscopy, O'Connor P J, oxygen consumption, physical energy, Priority Journal, Schoick R A V, School Child, scoring system, skeletal muscle, Trajectory, Willingham T 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]
Efficacy and safety of endoscopic dilation of esophageal strictures in epidermolysis bullosa
Tags: 2004, Adolescent, Adult, Anderson S H C, Article, Balloon dilatation, barium, Body Weight, Chappiti U, contrast enhancement, Doig L, Dysphagia, Eady R A J, endoscopic balloon dilatation, endoscopic therapy, epidermolysis bullosa, epidermolysis bullosa/th [Therapy], esophagus dilatation, esophagus stricture/th [Therapy], feeding difficulties, Female, Follow Up, Gastrointestinal Endoscopy, Human, Major Clinical Study, Male, Meenan J, Morbidity, Nutritional Status, Prinja H, Priority Journal, Propofol, School Child, scoring system, surgical intervention, Thompson R P H, Treatment Outcome, Williams K N
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
Gabapentin for the treatment of pain manifestations in children with severe neurological impairment: A single-centre retrospective review
Tags: 2019, alopecia/si [Side Effect], BMJ Paediatrics Open, Bourke B, Broderick A, Child, Clinical Article, Collins A, Devins M, Disease Severity, Drug Efficacy, Drug Substitution, Drug Withdrawal, gabapentin/ae [Adverse Drug Reaction], gabapentin/dt [Drug Therapy], gabapentin/pv [Special Situation for Pharmacovigilance], Gastroenterology, General Paediatrics, Human, Hussey S, hypertransaminasemia/si [Side Effect], Irritability, lethargy/si [Side Effect], Mannion R, muscle twitch, Neurodisability, Neurologic Disease, October 2019 List, Pain, Pain/dt [drug Therapy], Palliative Care, pregabalin/dt [Drug Therapy], pregabalin/pv [Special Situation for Pharmacovigilance], Priority Journal, Retrospective Study, Review, treatment duration, treatment response, vomiting/dt [Drug Therapy], vomiting/si [Side Effect]
Exploring knowledge and perceptions of palliative care to inform integration of palliative care education into cystic fibrosis care
Tags: 2019, Adolescence, Adolescent, Adult, Article, Attitude To Health, August 2019 List, Brown D E, Caregiver, Carney S D, Clinical Article, Communication, Cystic Fibrosis, Dellon E P, Female, Hailey C E, Health Care Personnel, Health Education, Helms S W, Human, lung fibrosis, Male, Palliative Care, Palliative Therapy, Parent, Patient Education, Pediatric Pulmonology, Perception, Prieur M G, Priority Journal, Qualitative Analysis, Schmidt H J, Semi Structured Interview, Shay R
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
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
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
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
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
Low prevalence of palliative care and ethics consultations for children with chronic critical illness
Tags: 2018, Acta Paediatrica, International Journal of Paediatrics, Article, Artificial Ventilation, Boss RD, childhood disease th [Therapy], Chronic Disease, Consultation, Critical Illness, Donohue PK, Ethics, Falck A, Goloff N, Hospital Admission, Human, Hutton N, Intensive Care Unit, Length Of Stay, Miles A, November 2018 List, Palliative Therapy, Prevalence, Priority Journal, Shapiro M, Tracheostomy, Weiss EM
Facebook Advertisements Recruit Parents of Children With Cancer for an Online Survey of Web-Based Research Preferences
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Parental perceptions of forgoing artificial nutrition and hydration during end-of-life care
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