Browse Items (15 total)
- Tags: Disease Severity
Stress Among Parents of Children With Severe Neurological Impairment in the Pediatric Intensive Care Unit
Tags: 2024, Adolescent, Adult, Article, Barton KS, Bogetz J, brain ventricle peritoneum shunt, Child, Child Parent Relation, Clinical Article, Cohort Analysis, confusion (uncertainty), Controlled Study, Disease Severity, ethnic background, Father, feeding tube, Female, Health Survey, Home Care, Hospital Admission, hospital discharge, Human, implanted vagus nerve stimulator, intrathecal baclofen pump, Journal of Palliative Medicine, legal guardian, Length Of Stay, Life Expectancy, Male, mortality risk, Neurodisability, noninvasive positive pressure ventilation, October List 2024, Oslin E, Palliative Therapy, Parental Stress, Patient Advocacy, Pediatric Hospital, Pediatric Intensive Care Unit, Personal Experience, Prospective Study, Qualitative Research, Quantitative Study, Rosenberg AR, Semi Structured Interview, Tracheostomy, Trowbridge A, United States, VULNERABILITY, Watson RS, Yi-Frazier J
Finnish children who needed long-term home respiratory support had severe sleep-disordered breathing and complex medical backgrounds
Tags: 2024, Acta Paediatrica, acute respiratory failure, adenoid hypertrophy, adenotonsillectomy, Adolescent, angiotensin receptor antagonist/pv [Special Situation for Pharmacovigilance], anxiety, apnea hypopnea index, April List 2024, Article, aspiration pneumonia/co [Complication], Asthma, automatic positive airway pressure, beta 2 adrenergic receptor stimulating agent/ih [Inhalational Drug Administration], beta 2 adrenergic receptor stimulating agent/pv [Special Situation for Pharmacovigilance], beta adrenergic receptor blocking agent/pv [Special Situation for Pharmacovigilance], brain hypoxia, Brain Tumor, cardiovascular agent/pv [Special Situation for Pharmacovigilance], central nervous system disease, central sleep apnea syndrome/th [Therapy], Child, childhood obesity, choana atresia/su [Surgery], Clinical Feature, Clinical Outcome, Cohort Analysis, Comorbidity, Continuous Positive Airway Pressure, Controlled Study, corticosteroid/ih [Inhalational Drug Administration], corticosteroid/pv [Special Situation for Pharmacovigilance], craniofacial malformation, craniofacial surgery, cranioplasty, Data Analysis Software, Demographics, Developmental delay, developmental disorder, diaphragm hernia, dipeptidyl carboxypeptidase inhibitor/pv [Special Situation for Pharmacovigilance], Disease Severity, Down Syndrome, Eskola V, Female, Finn (citizen), Follow Up, Home Care, Human, hypoventilation/th [Therapy], Icd-10, Infant, invasive ventilation, Jarvela M, Katila M, laryngomalacia, Lauhkonen E, Le Fort III osteotomy, Long Term Care, lung hypoplasia, Major Clinical Study, Makinen R, Male, Mandelin P, mask/am [Adverse Device Effect], maxilla hypoplasia/co [Complication], medical device complication/co [Complication], montelukast/pv [Special Situation for Pharmacovigilance], Multidisciplinary team, nasal mask, Neuromuscular Disease, noninvasive positive pressure ventilation, nose obstruction/co [Complication], obstructive sleep apnea/th [Therapy], Only Child, onset age, orthodontic procedure, Palliative Therapy, Pneumonia, Polysomnography, psychological aspect, respiratory care, Respiratory Distress Syndrome, Retrospective Study, Saarenpaa-Heikkila O, skin irritation/co [Complication], Sleep Apnea Syndromes, Sleep Apnea Syndromes/th [Therapy], sleep disorder/co [Complication], Sleep Disorders, SPSS version 28.00, steroid/pv [Special Situation for Pharmacovigilance], Tonsillectomy, tonsillotomy, Tracheostomy, treatment duration, University Hospital
A meta-ethnography of how children and young people with chronic non-cancer pain and their families experience and understand their condition, pain services, and treatments
Tags: 2023, abdominal pain, Adolescent, Analgesia, Analgesics Opioid, Anthropology Cultural, Caes L, Child, Child Parent Relation, Chronic Pain, Cochrane Database of Systematic Reviews, Complex Regional Pain Syndrome, cultural anthropology, Disease Severity, endometriosis, ethnography, Family, Family Life, February List 2024, Fibromyalgia, Forbat L, France E, Headache, Health Care Personnel, Health Service, Human, Humans, inflammatory bowel disease, Jordan A, juvenile rheumatoid arthritis, migraine, musculoskeletal pain, narcotic analgesic agent, Noyes J, outcome assessment, Pain Assessment, Pain Severity, patient-reported outcome, pediatric patient, Peer Group, Personal Experience, Prognosis, Quality Of Life, racism, Review, Sibling, Silveira Bianchim M, Social Care, Social Isolation, Social Support, Social Work, Systematic Review, Thomson K, Turley R, Uny I, Wellbeing
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
Supplementation with carnitine reduces the severity of constipation: A retrospective study of patients with severe motor and intellectual disabilities
Tags: 102767-28-2 (levetiracetam), 1069-66-5 (valproic acid), 1309-48-4 (magnesium oxide), 1317-74-4 (magnesium oxide), 14093-02-8 (iron), 14378-32-6 (zinc), 146-22-5 (nitrazepam), 1622-61-3 (clonazepam), 2017, 22316-47-8 (clobazam), 298-46-4 (carbamazepine), 461-06-3 (carnitine), 50-06-6 (phenobarbital), 53858-86-9 (iron), 541-15-1 (carnitine), 56-99-5 (carnitine), 57-30-7 (phenobarbital), 57-88-5 (cholesterol), 59-30-3 (folic acid), 6484-89-5 (folic acid), 68291-97-4 (zonisamide), 7439-89-6 (iron), 7440-66-6 (zinc), 7782-49-2 (selenium), 8028-68-0 (phenobarbital), 8047-84-5 (carbamazepine), 84057-84-1 (lamotrigine), 99-66-1 (valproic acid), acute brain disease, Adult, albumin, albumin blood level, anticonvulsant therapy, Aomatsu T, Article, bacterial meningitis, bed rest, body mass, brain infarction, carbamazepine/dt [Drug Therapy], carnitine, carnitine deficiency, carnitine deficiency/dt [Drug Therapy], carnitine/dt [Drug Therapy], Cerebral Palsy, Child, cholesterol blood level, cholesterol/ec [Endogenous Compound], Clinical Article, Clinical Trial, clobazam/dt [Drug Therapy], clonazepam/dt [Drug Therapy], Constipation, constipation/dt [Drug Therapy], constipation/pc [Prevention], Controlled Study, copper blood level, cupric ion/ec [Endogenous Compound], diet supplementation, Disease Severity, Endogenous Compound, enema/dt [Drug Therapy], enteric feeding, epilepsy/dt [Drug Therapy], Female, folic acid, folic acid blood level, folic acid/ec [Endogenous Compound], Gene Expression, groups by age, Hospital, Human, Human Tissue, infantile spasm, Inoue K, Intellectual Impairment, iron blood level, iron/ec [Endogenous Compound], Journal of Clinical Biochemistry and Nutrition, lamotrigine/dt [Drug Therapy], levetiracetam/dt [Drug Therapy], magnesium oxide/dt [Drug Therapy], Male, Medical Record Review, Middle Aged, motor dysfunction, Murata S, NCL3, neuronal ceroid lipofuscinosis, nitrazepam/dt [Drug Therapy], Pelizaeus Merzbacher disease, Pelizaeus- Merzbacher disease, periventricular leukomalacia, pharmacologic intervention, phenobarbital/dt [Drug Therapy], prealbumin, prealbumin/ec [Endogenous Compound], Preschool Child, Retrospective Study, School Child, selenium blood level, selenium/ec [Endogenous Compound], sex difference, Tamai H, trace element, Tuberous Sclerosis, valproic acid, valproic acid/dt [Drug Therapy], West syndrome, Yoden A, Young Adult, zinc/ec [Endogenous Compound], zonisamide/dt [Drug Therapy]
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
Validation of the Children's Hospital of Philadelphia Infant Test of Neuromuscular Disorders (CHOP INTEND)
Tags: (health care), 2011, atrophies of childhood/diagnosis, Child, Child Development/physiology, childhood/physiopathology, CHOP INTEND, Chung W K, Darras B T, De Vivo D C, Deng L Y, Disability Evaluation, Disease Severity, Dunaway S, Female, Finkel R S, Flickinger J, Glanzman A M, Humans, Infant, Kaufmann P, Male, Martens W B, McDermott M P, Montes J, Motor Skills/physiology, Muscle Study Group, natural-history, O'Hagen J, outcome assessment, Pediatric Neuromuscular Clinical Research, Pediatric Physical Therapy, Pediatrics, physical therapy/methods, Preschool, Psychometrics/methods, Quigley J, Rehabilitation, Riley S, scale development, Severity Of Illness Index, Sma, SMA1, smn2 copy number, spinal muscular, spinal muscular atrophies of, spinal muscular-atrophy, Sproule D, Tawil R, tone and motor problems, tool development, Validity, Yang M
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]
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]
Opinions of Israeli neonatologists about life and death decisions in neonates
Tags: 2018, Adult, Age, Article, Bin-nun A, Demography, disabled person, Disease Severity, Dying, Ethnicity, Family Attitude, Female, Health Care Cost, Human, Israel, Israeli, Journal Of Perinatology, Kasirer MY, Male, Medical Decision Making, Medical Ethics, medicolegal aspect, Middle Aged, Mimouni FB, Neonatal Intensive Care Unit, Neonatologist, Normal Human, November 2018 List, Personal Experience, Physician Attitude, Prospective Study, psychological well being, Questionnaire, Religion, Schimmel MS, sex difference, Simulation, Terminal Care
Designing pain research from the patient's perspective: What trial end points are important to patients with chronic pain?
Tags: 2001, Adult, Aged, Article, Asch DA, Backlog, Casarett D, Chronic Pain/dt [Drug Therapy], Clinical Article, Clinical Study, Controlled Study, Demography, Disease Severity, Dose Response, Empiricism, Evaluation, Female, Health Center, Hirschman K, Human, Interview, Journal Article, Karlawish J, Male, Medical Decision Making, Medical Information, Medical Research, Methodology, Opiate/do [Drug Dose], Opiate/dt [drug Therapy], Outcomes Research, Pain Assessment, Pain Clinic, Pain Medicine, Perception, Qualitative Analysis, Rating Scale, Sankar P, Sleep, Urban Area
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