Browse Items (57 total)
- Tags: Priority Journal
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
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
Facebook Advertisements Recruit Parents of Children With Cancer for an Online Survey of Web-Based Research Preferences
Tags: 2014, Adolescent, advertizing, Akard TF, Article, Backlog, Cancer Nursing, Cancer Palliative Therapy, Cancer Patient, Cancer Recurrence, Cancer Research, Caregiver, Child, Childhood Cancer, click, computer, Diseases, Facebook, Female, Gilmer Mary Jo, Health Survey, Human, Income, Information Processing, Internet, Interpersonal Communication, Journal Article, legal guardian, Major Clinical Study, Male, mobile phone, Neoplasm, Nurse, Oncology, Only Child, Palliative Therapy, Parent, Parental Attitude, participant recruitment, Patient, Population, Priority Journal, Sample Size, School Child, social media, social network, Video Recording, Wray S
Improving cancer care for children in the developing world: Challenges and strategies
Tags: 2017, Accreditation, Al Lamki Z, Antineoplastic Agent, Awareness, Cancer Diagnosis, Cancer Recurrence, Cancer Registry, Cancer Research, Cancer Survival, Cancer Therapy, Child Care, Childhood Cancer, Clinical Effectiveness, Clinical Trial (topic), Cost Effectiveness Analysis, Country Economic Status, Cultural Factor, Current Pediatric Reviews, Delayed Diagnosis, Diagnostic Error, Family Therapy, Health Care Availability, Health Care Cost, Health Care Personnel, Human, Job Change, Medical Education, Medical Technology, Palliative Therapy, Patient Abandonment, Patient Referral, Poverty, Priority Journal, Program Sustainability, Review, Sepsis, Stratification, Toxicity
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
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]
Pharmacological Interventions For Pain In Children And Adolescents With Life-limiting Conditions
Tags: 103-90-2 (paracetamol), 1095-90-5 (methadone), 1134-47-0 (baclofen), 124-90-3 (oxycodone), 125-56-4 (methadone), 133-16-4 (chloroprocaine), 1333-08-0 (benzocaine), 136-47-0 (tetracaine), 137-58-6 (lidocaine), 15307-79-6 (diclofenac), 15307-86-5 (diclofenac), 15687-27-1 (ibuprofen), 18010-40-7 (bupivacaine), 2017, 2180-92-9 (bupivacaine), 23142-53-2 (methadone), 24847-67-4 (lidocaine), 297-88-1 (methadone), 31121-93-4 (ibuprofen), 38396-39-3 (bupivacaine), 3858-89-7 (chloroprocaine), 40391-99-9 (pamidronic Acid), 437-38-7 (fentanyl), 52-26-6 (morphine), 52485-79-7 (buprenorphine), 527688-20-6 (ibuprofen), 53152-21-9 (buprenorphine), 55750-21-5 (bupivacaine), 56934-02-2 (lidocaine), 57-27-2 (morphine), 57248-88-1 (pamidronic Acid), 66376-36-1 (alendronic Acid), 73-78-9 (lidocaine), 74103-06-3 (ketorolac), 76-42-6 (oxycodone), 76-57-3 (codeine), 76-99-3 (methadone), 79261-49-7 (ibuprofen), 94-09-7 (benzocaine), 94-24-6 (tetracaine), Alendronic Acid/ct [clinical Trial], Alendronic Acid/dt [drug Therapy], Analgesia, Baclofen/ct [clinical Trial], Baclofen/dt [drug Therapy], Beecham E, Benzocaine/ct [clinical Trial], Benzocaine/dt [drug Therapy], Bluebond-Langner M, Bupivacaine/ct [clinical Trial], Bupivacaine/dt [drug Therapy], Buprenorphine/ct [clinical Trial], Buprenorphine/dt [drug Therapy], Candy B, Cerebral Palsy, Chloroprocaine/ct [clinical Trial], Chloroprocaine/dt [drug Therapy], Cochrane Database of Systematic Reviews, Codeine/ct [clinical Trial], Codeine/dt [drug Therapy], Diclofenac/ct [clinical Trial], Diclofenac/dt [drug Therapy], Drug Clearance, Drug Efficacy, Drug Safety, Fentanyl/ct [clinical Trial], Fentanyl/dt [drug Therapy], Functional Status, Howard R, Human, Ibuprofen/ct [clinical Trial], Ibuprofen/dt [drug Therapy], Jones L, Ketorolac/ct [clinical Trial], Ketorolac/dt [drug Therapy], Laddie J, Length Of Stay, Lidocaine/ct [clinical Trial], Lidocaine/dt [drug Therapy], McCulloch R, Methadone/ct [clinical Trial], Methadone/dt [drug Therapy], Morphine/ct [clinical Trial], Morphine/dt [drug Therapy], Neuropathic Pain/dt [drug Therapy], Nociceptive Pain/dt [drug Therapy], Osteogenesis Imperfecta, Oxycodone/ct [clinical Trial], Oxycodone/dt [drug Therapy], Pain Intensity, Pain Severity, Pamidronic Acid/ct [clinical Trial], Pamidronic Acid/dt [drug Therapy], Paracetamol/ct [clinical Trial], Paracetamol/dt [drug Therapy], Priority Journal, Psychological Well-being, Quality Of Life, Randomized Controlled Trial (topic), Rees H, Review, Risk Benefit Analysis, September 2017 List, Tetracaine/ct [clinical Trial], Tetracaine/dt [drug Therapy], Treatment Outcome, Vickerstaff V
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
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
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
End-of-life Decisions For Extremely Preterm Infants - A Matter Of Language, Gender And Education?
Tags: 2017, Acta Paediatrica, April 2017 List, Artificial Ventilation, Bührer C, Editorial, Education, Ethical Decision Making, Female, France, Gender, Germany, Human, Human Experiment, Infant, Italy, Language, Male, Physician Attitude, Prematurity, Prematurity/dm [disease Management], Priority Journal, Quality Of Life, Shared Decision-making, Switzerland, Terminal Care
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
Late Effects of Treatment and Palliative Care
Tags: 147-94-4 (cytarabine), 154-93-8 (carmustine), 15475-56-6 (methotrexate), 15663-27-1 (cisplatin), 2017, 26035-31-4 (cisplatin), 59-05-2 (methotrexate), 69-74-9 (cytarabine), 7413-34-5 (methotrexate), 96081-74-2 (cisplatin), Advance Care Planning, Appetite Disorder, Banerjee A, Bone Density, Brain Tumor, Carmustine, Central Nervous System Tumor, Chang E, Childhood Cancer Survivor, Cisplatin, Constipation, Corticosteroid, Cytarabine, Diarrhea, Dyspnea, Endocrine Disease, Fatigue, Genetic Polymorphism, Goldsby R, Health Care Quality, Human, Incidence, Medical Decision Making, Medulloblastoma, Methotrexate, Morbidity, Mortality Rate, Mueller S, Nausea And Vomiting, Neuroectoderm Tumor, Neuropathic Pain, Neuropsychological Test, November 2017 List, Pain Assessment, Palliative Therapy, Patient Care, Pediatric Oncology, Phase 1 Clinical Trial (topic), Priority Journal, Psychosocial Disorder, Quality Of Life, Questionnaire, Radiation Injury, Respiration Depression, Seizure, Signal Transduction, Spasticity
Historical Developments In Children's Deep Brain Stimulation
Tags: 2017, Adult, Basal Ganglion, Brain Depth Stimulation, Central Nervous System, Child, Cif L, Clinical Feature, Clinical Outcome, Clinical Study, Coubes P, Degenerative Disease, Dystonia, Dystonia/su [surgery], Dystonic Disorder/su [surgery], European Journal of Paediatric Neurology, Globus Pallidus, Human, March 2017 List, Medical History, Myoclonus, Myoclonus Dystonia/su [surgery], Nerve Cell Network, Nerve Conduction, Neuromodulation, Palliative Therapy, Pediatrics, Priority Journal, Review, Side Effect, Subthalamic Nucleus, Surgery, Symptom, Thalamus, Thalamus Nucleus
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]
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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