Browse Items (61 total)
- Tags: Developmental Medicine and Child Neurology
Impact of disability-based discrimination in healthcare on parents of children with medical complexity.
Tags: 2024, Adolescent, Adult, Alvey J, Ames SG, Child, Delaney RK, Delgado-Corcoran C, Developmental Medicine and Child Neurology, Disabled Children, Disabled Persons, February List 2025, Female, Houtrow AJ, Humans, Male, Middle Aged, Murphy N, Parents, Parents/px [psychology], Poverty, Qualitative Research, racism, Social Discrimination, Trust, United States, Watt MH
Tools used to measure the impact of comorbidities on surgical outcomes in children with complex chronic conditions: A scoping review
Advance Care Plan Discussion among Parents of Children with Cerebral Palsy
Gastrostomy tube insertion in children with developmental or acquired disorders: a register-based study
The Chameleon Project: A children's end of life care quality improvement project
Tags: 2020, Batey N, Bifani E, Chameleon Project, Chhaochharia A, Children, Clements H, Connolly A, Deorukker S, Developmental Medicine and Child Neurology, Dorsett C, Douglas E, end-of-life, Griffin H, Haynes S, Hill S, July 2020 List, Kelly N, Lovegrove S, Manning J, quality improvement project, Sheikh N, Turnbull J, Webb K, Whitehouse W P, Wolff A
Challenges primary care providers face when caring for children with medical complexity
End of life care in PICU across the UK
Behavioral aspects of Lesch-Nyhan disease and its variants
Tags: 2005, Adolescent, Adult, Aggression, alertness, anxiety, behavioral problems, characteristics, Child, Depression, Developmental Medicine and Child Neurology, distractibility, Female, Harris J C, Humans, Jinnah H A, Lesch-Nyhan syndrome, Lesch-Nyhan Syndrome/px [Psychology], Male, Meyer S M, Nyhan W L, Puig J G, Schretlen D J, Self-Injurious behavior, self-injury, Severity Of Illness Index, Trajectory, Ward J, Yun J
Melatonin treatment for sleep disorders in children with neurodevelopmental disorders: an observational study
Tags: 2002, Adolescent, Child, Child Preschool, Davies P, Developmental Disabilities, Developmental Disabilities/complications, Developmental Medicine and Child Neurology, Dose-Response Relationship Drug, Epilepsy, Epilepsy/complications, Female, Humans, Infant, Lennox-Gastaut syndrome, Leukodystrophy, Male, Medical Records, melatonin, Melatonin/therapeutic use, MPSII, MPSIII, Nervous System Diseases, Nervous System Diseases/complications, Outpatients, pharmacologic intervention, Q3 Scoping Review Results, Ross C, Sex Factors, Sleep Disorders/complications/drug therapy, sleep disturbance/disorders, Sleep Wake Disorders, Vision Disorders, Vision Disorders/complications, Whitehouse W
Gross motor abilities in children with Hurler syndrome
Modes and patterns of self-mutilation in persons with Lesch-Nyhan disease
Tags: 2003, Adolescent, Adult, Anticonvulsants/therapeutic use, Barabas G, behavioral problems, Carbamazepine/therapeutic use, characteristics, Child, Child Preschool, Chromosomes Human X/genetics, Developmental Medicine and Child Neurology, Diazepam/therapeutic use, Eddey G E, Female, Giacomini K D, Humans, Infant, Lesch-Nyhan syndrome, Lesch-Nyhan Syndrome/genetics, Male, Reck J F, Robey K L, Self-Injurious Behavior/diagnosis/drug therapy, self-injury, Surveys And Questionnaires, Trajectory
TEACHING SELF-FEEDING SKILLS TO PATIENTS WITH RETT-SYNDROME
Systematic review of melatonin treatment in children with neurodevelopmental disabilities and sleep impairment
Tags: 2004, Antioxidants/therapeutic use, Appleton R E, Brain/physiopathology, Child, Developmental Disabilities/drug therapy/epidemiology/physiopathology, Developmental Medicine and Child Neurology, Humans, melatonin, Melatonin/therapeutic use, pharmacologic intervention, Phillips L, Rett syndrome, sleep disturbance/disorders, Sleep Wake Disorders/epidemiology, Wakefulness/physiology
Use of melatonin to treat sleep disorders in tuberous sclerosis
Behaviour in Cornelia de Lange syndrome: a systematic review
Air swallowing in Rett syndrome
Tags: 2000, Adolescent, Adult, Aerophagy/di [Diagnosis], Aerophagy/pp [Physiopathology], Aerophagy/px [Psychology], air bloat, Apnea/di [Diagnosis], Apnea/pp [Physiopathology], Apnea/px [Psychology], Child, Child Preschool, Developmental Medicine and Child Neurology, Ellis R E, Feeding Behavior/ph [Physiology], feeding difficulties, Female, Fluoroscopy, gum shield, hollow tube, Humans, hyperventilation, Larynx/pp [Physiopathology], Morton R E, palatal training devices, physical intervention, Pinnington L, Rett syndrome, Rett Syndrome/di [Diagnosis], Rett Syndrome/pp [Physiopathology], Rett Syndrome/px [Psychology], Risk Factors, Stress Psychological/co [Complications], Video Recording
Sleep dysfunction in Rett syndrome: a trial of exogenous melatonin treatment
Assessment of impaired coordination between respiration and deglutition in children and young adults with ataxia telangiectasia
Tags: 2016, ataxia telangectasia, cerebral-palsy, characteristics, Crawford T O, Developmental Medicine and Child Neurology, Disease, dynamics, Dysphagia, expiratory patterns of peri-deglutitive airflow, feeding difficulties, He X M, Lederman H M, Lefton-Greif M A, Management, neurodegeneration, Neurosciences & Neurology, Patterns, Pediatrics, Perlman A L, pharyngeal, Trajectory
Sleep disorder and epilepsy in children with tuberous sclerosis: a questionnaire-based study
Tags: 1994, Adolescent, behavioral problems, characteristics, Child, Child Preschool, Developmental Disabilities/complications, Developmental Medicine and Child Neurology, Epilepsy/etiology, Female, Humans, Hunt A, Learning Disorders/complications, Male, Parents/psychology, sleep disturbance, Sleep Wake Disorders/etiology/psychology, Stores G, Stress Psychological/etiology, Surveys And Questionnaires, Trajectory, Tuberous Sclerosis, Tuberous Sclerosis/complications/psychology
Self-injurious behaviour in young children with Lesch-Nyhan syndrome
Tags: 2001, behavioral problems, characteristics, Child Preschool, Developmental Medicine and Child Neurology, Environment, Extinction Psychological, Hall S, Humans, Lesch-Nyhan syndrome, Lesch-Nyhan Syndrome/diagnosis/prevention & control, Male, Murphy G, Oliver C, Self-Injurious Behavior/prevention & control, self-injury, Severity Of Illness Index, Sign Language, Trajectory
Correlates of maladaptive behavior in individuals with 5p- (cri du chat) syndrome
Tags: 1997, Adjustment Disorders/etiology, Adolescent, Adult, Aggression, Analysis of Variance, behavioral problems, characteristics, Child, Child Preschool, Child Behavior Disorders/etiology, Clarke D J, Cri-du-chat, Cri-du-Chat Syndrome/genetics/psychology, Developmental Medicine and Child Neurology, Dykens E M, Female, Gene Deletion, Humans, hyperactivity, impulsivity, Intellectual Disability/psychology, low mood, Male, Mental Disorders/etiology, Mood, pain behaviors, Psychiatric Status Rating Scales, repetitive language use, Risk Factors, self-injury, Surveys And Questionnaires, Trajectory, Translocation Genetic
Level of purposeful hand function as a marker of clinical severity in Rett syndrome
Tags: 2010, Adolescent, Adult, Age Factors, Bebbington A, characteristics, Child, Child Preschool, Cross-sectional Studies, Databases as Topic, Developmental Medicine and Child Neurology, Downs J, Female, Genotype, Ghosh S, Hand, Humans, Jacoby P, Kaufmann W E, Leonard H, Methyl-CpG-Binding Protein 2, Motor Activity, Mutation, Phenotype, Registries, Rett syndrome, Severity Of Illness Index, tone and motor problems, Trajectory, Video Recording, Walking, Williams A, Young Adult
Quantification of walking-based physical activity and sedentary time in individuals with Rett syndrome
Tags: 2017, Adolescent, Adult, characteristics, Controlled Study, Cross-sectional Study, Data Base, Developmental Medicine and Child Neurology, Downs J, Female, Hill K, Human, Leonard H, linear regression analysis, Major Clinical Study, Model, Newton N, Quantitative Study, Rett syndrome, scoliosis, Seizure, tone and motor problems, Trajectory, Wakefulness, Walking, Wong K
Sleep problems in children with Sanfilippo syndrome.
Tags: 1996, Bax M, Child, Child Preschool, Colville G A, Developmental Medicine and Child Neurology, Female, Humans, Longitudinal Studies, Male, MPS III, Mucopolysaccharidosis III/classification, Mucopolysaccharidosis III/complications, psychological intervention, Questionnaires, Sleep Disorders/etiology, Sleep Disorders/therapy, sleep disturbance/disorders, Time Factors, Watters J P, Yule W
Findings from a multidisciplinary clinical case series of females with Rett syndrome
Standardized assessment of behavior and adaptive living skills in juvenile neuronal ceroid lipofuscinosis
Tags: 2006, Adams H, batten-disease, behavioral problems, characteristics, childhood, Children, De Blieck E A, Developmental Medicine and Child Neurology, Dure L, Epilepsy, impairments, Kwon J, Marshall F J, Mink J W, NCL3, NCL6, Neurosciences & Neurology, Pearce D A, Pediatrics, psychiatric problems, Ramirez-Montealegre D, Rothberg P G, Scale, Symptoms, Trajectory, Validity
Reliability and predictive validity of the Standardized Infant NeuroDevelopmental Assessment neurological scale
Tags: 2019, Developmental Medicine and Child Neurology, Diagnostic Techniques, Female, Hadders-Algra M, Humans, Infant, Longitudinal Studies, Male, Neurodevelopmental Disorders/diagnosis, Neurological/standards, November 2019 List, Philippi H, Pietz J, Reproducibility of Results, Rupp A, Severity Of Illness Index, Tacke U
Core outcome set for children with neurological impairment and tube feeding
Supportive care in children with spinal muscular atrophy type 1: Results from a french multicentric study
Tags: 2019, August 2019 List, Barnerias C, Cances C, Caregiver, Chabrol B, Child, Clinical Research, conference abstract, Controlled Study, Cuisset J M, Death, Desguerre I, Developmental Medicine and Child Neurology, Drug Therapy, Female, France, Gastrostomy, History, Hully M, Human, Intensive Care Unit, Isapoff A, Major Clinical Study, Male, new drug, Noninvasive Ventilation, nusinersen, nutrition supplement, Palliative Therapy, Physician, Prospective Study, Rivier F, Ropars J, Sabouraud P, Sedation, Sedative Agent, standardization, Vuillerot C, Werdnig Hoffmann disease
Changing landscape of paediatric palliative care
Tags: 2018, Adult, August 2018 List, catering service, Child, conference abstract, Developmental Medicine and Child Neurology, Diagnosis, Epilepsy, Female, Hills M, Hospice, Human, landscape, life event, Major Clinical Study, Male, Medical Care, Morbidity, Mortality, muscle spasm, Nallapeta N, Palliative Therapy, Retrospective Study, Young Adult
A systematic review of activities of daily living measures for children and adolescents with cerebral palsy
Recent trends in cerebral palsy survival. Part II: individual survival prognosis
Tags: 2014, Adolescent, Adult, Backlog, Brooks JC, California, Cerebral Palsy, Child, Developmental Medicine and Child Neurology, Disabled Persons, Female, Humans, Infant, Journal Article, Kaplan-Meier Estimate, Life Expectancy, Male, Mortality, Preschool, Prognosis, Rosenbloom L, Shavelle RM, Strauss DJ, Tran Linh M, Wu YW, Young Adult
Sleep disturbances in children, adolescents, and young adults with severe psychomotor impairment: impact on parental quality of life and sleep
Tags: 2014, Adolescent, Adult, Backlog, Blankenburg M, Caregivers, Child, Developmental Medicine and Child Neurology, Female, Health Status, Humans, Infant, Journal Article, Male, Michel E, Newborn, Parents, Preschool, Psychomotor Disorders, Quality Of Life, Questionnaires, Retrospective Studies, Sleep Disorders, Tietze AL, Young Adult, Zernikow B
Prevalence and management of dystonia in a paediatric palliative care cohort
Tags: 2017, 302-17-0 (chloral hydrate), 4205-90-7 (clonidine), 4205-91-8 (clonidine), 57066-25-8 (clonidine), benzodiazepine derivative, Child, chloral hydrate, Clinical Article, clonidine, Cohort Analysis, Cross-sectional Study, Developmental Medicine and Child Neurology, Diagnosis, Documentation, Dystonia, England, Female, Hughes G, Human, joint, Laddie J, Lumsden DE, Male, March 2018 List, Neurology, Palliative Therapy, precancer, Preschool Child, Prevalence, Seizure, Slater T
Neurodegenerative conditions: Exploring the role of music to enhance speech and cognitive functioning in children with batten disease
Central hypothermia as a cause of acute pancreatitis in children with neurodevelopmental impairment
Tags: 2008, Adolescent, Backlog, Body Temperature Regulation, Child, Cohort Studies, Developmental Disabilities/complications/physiopathology, Developmental Medicine and Child Neurology, Female, Hauer JM, Humans, Hypothermia/complications/prevention & control/psychology, Journal Article, Male, Pancreatitis/diagnosis/etiology/therapy, Preschool, Q3 Scoping Review Results, Recurrence, Retrospective Studies, Risk Factors
Medical, surgical, and health outcomes of gastrostomy feeding
Tags: 2006, Adolescent, Anthropometry, Backlog, Carr LJ, Cass H, Child, Cognition Disorders/epidemiology, Craig GM, Developmental Medicine and Child Neurology, Diet Records, Disabled Children, Female, Gastrostomy/statistics & numerical data, Hastings RP, Health Status, Humans, Infant, Journal Article, Lawson M, Male, Motor Skills Disorders/epidemiology, Nutritional Failure, Nutritional Status, Postoperative Complications/epidemiology, Preschool, Prospective Studies, Psychology, Reilly S, Ryan M, Spitz L, Townsend J
Pyruvate dehydrogenase E3 binding protein (protein X) deficiency
Tags: 2006, Backlog, Brown GK, Brown RM, Child, Developmental Medicine and Child Neurology, DNA Mutational Analysis, Female, Head RA, Humans, Infant, Journal Article, Male, Morris AA, Preschool, Protein Subunits/deficiency/genetics, Pyruvate Dehydrogenase Complex Deficiency Disease/diagnosis/genetics/metabolism, Pyruvate Dehydrogenase Complex/genetics/metabolism, Q3 Scoping Review Results, Raiman JA, Severity Of Illness Index, Walter JH, Whitehouse WP
Coping with Dravet syndrome: parental experiences with a catastrophic epilepsy
Tags: 2006, Adaptation, Adolescent, Adult, Backlog, Camfield CS, Camfield PR, Caregivers/psychology, Child, Chronic Disease, Developmental Medicine and Child Neurology, Epilepsy/nursing/psychology, Family Health, Female, Humans, Journal Article, Male, Middle Aged, Nolan KJ, Parent-child Relations, Parents/psychology, Preschool, Psychological, Psychological/psychology, Q3 Scoping Review Results, Seizures/nursing/psychology, Severity Of Illness Index, Social Isolation, Social Support, Stress, Syndrome
Initial development and validation of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD).
Tags: 2006, Activities of Daily Living, Adolescent, Backlog, Campbell K, Caregivers, Cerebral Palsy/classification/nursing/psychology, Child, Developmental Medicine and Child Neurology, Disabled Persons/psychology/rehabilitation, Fehlings D, Female, Health Status, Humans, Journal Article, Kiran S, Knights S, Longitudinal Studies, Male, Narayanan UG, Preschool, Quality Of Life, Questionnaires, Reproducibility of Results, Severity Of Illness Index, Weir S