Browse Items (1678 total)
- Tags: Male
Esophageal strictures in children with recessive dystrophic epidermolysis bullosa: an 11-year experience with fluoroscopically guided balloon dilatation
Tags: 2006, 24GP945V5T (Barium), Adolescent, Azizkhan R G, barium, Catheterization, Child, Cohen A P, Dystrophica/co [Complications], epidermolysis bullosa, Esophageal Stenosis/et [Etiology], Esophageal Stenosis/th [Therapy], Farrell M K, feeding difficulties, Female, fluoroscopically guided balloon dilatation, Hammelman B D, Humans, Johnson N D, Journal Of Pediatric Surgery, Lucky A W, Male, Preschool, Racadio J M, Retrospective Studies, Stehr W, surgical intervention, Treatment Outcome, Wittkugel E
Parent engagement in perinatal mortality reviews: an online survey of clinicians from six high-income countries
Tags: 2021, April 2021 List, Bakhbakhi D, Bereavement Care, Bjog, Boyle FM, Burden C, Cross-sectional Studies, Developed Countries, Female, Flenady V, Health Care Surveys, Horey D, Humans, Infant Newborn, Male, Medical Audit/methods, parent engagement, Parents, Patient Participation, Patient Safety, Perinatal Mortality, perinatal mortality review, Siassakos D, Silver RM, Stillbirth
Melatonin treatment in individuals with intellectual disability and chronic insomnia: a randomized placebo-controlled study
Tags: 2008, Adolescent, Adult, Aged, Braam W, Central Nervous System Depressants/adverse effects/therapeutic use, Child, Child Preschool, chromosome 18q deletion, Chronic Disease, Comorbidity, Curfs L, Didden R, Double-Blind Method, Female, Humans, Journal Of Intellectual Disability Research, Male, melatonin, Melatonin/adverse effects/therapeutic use, Mental Retardation/epidemiology/psychology, Middle Aged, MPS III, pharmacologic intervention, Q3 Scoping Review Results, Saliva, sleep disturbance/disorders, Sleep Initiation and Maintenance Disorders/drug therapy/epidemiology/psychology, Smits M, Time Factors, Treatment Outcome
Insights into the perception that research ethics committees are a barrier to research with seriously ill children: A study of committee minutes and correspondence with researchers studying seriously ill children
Tags: 2020, Adolescent, April 2021 List, Bluebond-Langner M, Butler AE, Child, Child Preschool, Content Analysis, Ethics Committees, Ethics Committees Research, Female, Human Experimentation/ethics, Humans, Infant, Infant Newborn, Male, Palliative Medicine, Research, Research Design, Terminally Ill, United Kingdom, Vincent 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
Genome Sequencing as a Diagnostic Test in Children With Unexplained Medical Complexity
Tags: 2020, Arje D, Buera J, Canada, Child, Child Preschool, Chitayat D, Cohen E, Cohn RD, Costain G, Curtis M, Female, Genetic Testing/statistics & numerical data, Hayeems RZ, Humans, JAMA Network Open, Luca S, Male, Marano M, March 2021 List, Marshall CR, Mendoza-Londono R, Meyn MS, Orkin J, Predictive Value of Tests, Prospective Studies, Reproducibility of Results, Reuter MS, Scherer SW, Snell M, Somatoform Disorders/diagnosis, Stavropoulos DJ, Sung WWL, Thiruvahindrapuram B, Trost B, Veenma D, Walker S, Whole Genome Sequencing/statistics & numerical data, Yuen RKC
Missing life stories. The narratives of palliative patients, parents and physicians in paediatric oncology
Tags: 2017, Adolescent, Adult, Attitude To Death, Attitude To Health, Bone Neoplasms/psychology, Child, De CE, Disease Progression, Dying, Elger BS, European Journal Of Cancer Care, Female, Humans, Leukemia/psychology, lived experience, Male, Medical Oncology, Middle Aged, Narration, Narrative, Neoplasms/psychology, oncologists, Oncology 2018 List, Paediatric oncology, Palliative Care, Parents, Pediatrics, Qualitative Research, Sarcoma/psychology, Soft Tissue Neoplasms/psychology, Stories, Switzerland, Wangmo T
Neuropsychological attention deficits in tuberous sclerosis complex (TSC)
Tags: 2009, Adolescent, alertness, American Journal of Medical Genetics Part A, Attention Deficit Disorder with Hyperactivity/psychology, Bolton P F, Case-Control Studies, characteristics, Child, de Vries P J, Female, Gardiner J, Humans, Male, neuropsychological attention deficits, Neuropsychological Tests, Task Performance and Analysis, Trajectory, Tuberous Sclerosis, Tuberous Sclerosis/psychology
Parent-Reported Symptoms and Medications Used Among Children With Severe Neurological Impairment
Tags: 2020, Adolescence, Blackmer AB, Central Nervous System Agents -- Therapeutic Use, Child, Child Preschool, Comorbidity, Confidence Intervals, Cross Sectional Studies, Data Analysis Software, Descriptive Statistics, Fairclough DL, Feinstein JA, Female, Feudtner C, Funding Source, Gregoire LA, Health Resource Utilization, Holstein J, Human, Infant, JAMA Network Open, Kempe A, Male, March 2021 List, Nervous System Diseases -- Epidemiology -- In Adolescence, Nervous System Diseases -- Epidemiology -- In Infancy and Childhood, Nervous System Diseases -- Symptoms, Peripheral Nervous System Agents -- Therapeutic Use, Polypharmacy, Record Review, Samay S, scales, Severity of Illness, Valuck RJ
Development of a video-based evaluation tool in Rett syndrome
Tags: 2007, Adolescent, Adult, Burford B, Child, Diagnosis Differential, Downs J, Ellaway C, Feasibility Studies, feeding difficulties, Female, filming and coding protocol, Fyfe S, Humans, Journal of Autism and Developmental Disorders, Kaufmann W E, Laurvick C L, Leonard H, Lister J, Male, McIlroy O, Movement Disorders/diagnosis/etiology, Msall M, Phenotype, Philippe C, Reilly S, Rett syndrome, Rett Syndrome/complications/diagnosis, scale development, tone and motor problems, tool development, Videotape Recording
Melatonin for sleep problems in children with neurodevelopmental disorders: randomised double masked placebo controlled trial
Tags: 2012, Adolescent, Allport T, Appleton R, British Medical Journal, Central Nervous System Depressants/administration & dosage/adverse effects, Central Nervous System Diseases/complications, Child, Child Preschool, Child Behavior/drug effects, Choonara I, Developmental Disabilities/complications, Dose-Response Relationship Drug, Drug Monitoring, Edmond A, Family Health, Female, Gamble C, Gringras P, Humans, Jones A P, Male, melatonin, Melatonin/administration & dosage/adverse effects, Montgomery P, pharmacologic intervention, Polysomnography/methods, Q3 conditions, Severity Of Illness Index, sleep disturbance/disorders, Sleep Wake Disorders/diagnosis/drug therapy/etiology, Sleep/drug effects, Sutcliffe A, Treatment Outcome, unspecified Q3 conditions, Whitehouse W P, Wiggs L, Williamson P R
Health and sleep problems in Cornelia de Lange Syndrome: a case control study
Tags: 2008, Adolescent, Arron K, behavioral problems, Case-Control Studies, characteristics, Comorbidity, De Lange syndrome, De Lange Syndrome/epidemiology/psychology, Ear Diseases/epidemiology/psychology, Eye Diseases/epidemiology/psychology, Female, Gastrointestinal Diseases/epidemiology/psychology, Hall S, Health Status, Hernia/epidemiology/psychology, Humans, Intellectual Disability/epidemiology/psychology, Journal Of Intellectual Disability Research, Male, Oliver C, Prevalence, Self-Injurious Behavior/epidemiology/psychology, self-injury, Severity Of Illness Index, Skin Diseases/epidemiology/psychology, sleep disturbance, Sleep Wake Disorders/epidemiology, Sloneem J, Stomatognathic Diseases/epidemiology/psychology, Surveys And Questionnaires, Trajectory
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
Melatonin ineffective in neuronal ceroid lipofuscinosis patients with fragmented or normal motor activity rhythms recorded by wrist actigraphy
Tags: 0 (Antioxidants), 1999, Adolescent, Adult, Antioxidants/tu [Therapeutic Use], Child, Circadian Rhythm, Dose-Response Relationship, Drug Electrophysiology, Female, Hätönen T, Heiskala H, Humans, JL5DK93RCL (Melatonin), Kirveskari E, Laakso M L, Male, melatonin, Melatonin/tu [Therapeutic Use], Molecular Genetics and Metabolism, NCL3, Neuronal Ceroid-Lipofuscinoses/dt [Drug Therapy], pharmacologic intervention, Sainio K, Santavuori P, sleep disturbance/disorders, Sleep Wake Disorders/th [Therapy]
Constipation in epidermolysis bullosa: successful treatment with a liquid fiber-containing formula
Tags: 1997, Adolescent Child, Atherton D, Child, Clayden G, Constipation, Constipation/co [Complications], Constipation/th [Therapy], epidermolysis bullosa, Epidermolysis Bullosa/co [Complications], Female, fiber-containing liquid formula Enrich, Food, Formulated, Haynes L, Humans, Male, Pediatric Dermatology, pharmacologic intervention, Preschool
The codesign of an interdisciplinary team-based intervention regarding initiating palliative care in pediatric oncology
Tags: 2018, Article, Bone Marrow Transplantation, Casas JA, Child, Childhood Cancer, Clinical Article, DiDomenico C, Feasibility Study, Female, Feudtner C, frustration, Hill DL, Human, Male, Oncology 2018 List, Palliative Therapy, solid malignant neoplasm, Supportive Care In Cancer, Szymczak JE, Uncertainty, Walter JK
Prospective study of spinal muscular atrophy before age 6 years. DCN/SMA Group
Tags: 1993, Browne R H, Buncher C R, characteristics, Child, Child Preschool, facial weakness, Female, Humans, Iannaccone S T, Infant, Male, Motor Skills/physiology, Muscle Contraction/physiology, Neurologic Examination, Pediatric Neurology, Prospective Studies, Range of Motion Articular/physiology, Reflex Stretch/physiology, Samaha F J, SMA1, Spinal Muscular Atrophies of Childhood/diagnosis/physiopathology, Sucking Behavior/physiology, tone and motor problems, tongue fasciculation, Trajectory
Use of standardized body composition measurements and malnutrition screening tools to detect malnutrition risk and predict clinical outcomes in children with chronic conditions
Tags: 2020, Adolescent, American Journal of Clinical Nutrition, Anthropometry, Body Composition, Child, Child Preschool, Child Development, Child Nutrition Disorders/diagnosis, Chronic Disease, Clinical outcomes, Fawbert K, Female, Fewtrell M, Hill S, Humans, Kennedy K, Lara-Pompa NE, Macdonald S, Male, malnutrition, March 2021 List, nutritional risk, pediatric patients, Risk Factors, Screening, Shaw V, Valente J, Wells JC, Williams J
Parent Perspectives During Hospital Readmissions for Children With Medical Complexity: A Qualitative Study
Tags: 2020, 2022 Special Edition 1 - Parent Perspectives, Academic Medical Centers, Adolescent, Attitude To Health, Child, Chronic Disease, Continuity Of Patient Care, Freund KM, Health Knowledge, Attitudes, Practice, Health Services Accessibility, Hospital Pediatrics, Infant, Interviews As Topic, Krcmar R, Leary JC, LeClair AM, Male, Newborn Infant, Parents, patient readmission, Preschool Child, Qualitative Research, Yoon GH
Children With Intellectual Disability and Hospice Utilization: The Moderating Effect of Residential Care
Tags: 2018, California, Child, December 2018 List, Female, Hospice Care, Hospital Admission, Human, intellectual impairment/th [Therapy], Lindley LC, Long Term Care, Male, Medicaid, Organization And Management, Patient Preference, Statistics And Numerical Data, Terminal Care, The American Journal of Hospice & Palliative Care, United States, utilization
Experience of Perinatal Death From the Father's Perspective
Assessment of Bereaved Caregiver Experiences of Advance Care Planning for Children With Medical Complexity
Tags: 2020, 2022 Special Edition 1 - Parent Perspectives, Advance Care Planning, Amin R, Beatty M, Bereavement, Caregivers, Child, Cohen E, Hellmann J, Infant, Interviews As Topic, JAMA Network Open, Lord S, Male, Moore C, multimorbidity, Netten K, Orkin J, Parents, Preschool Child, Rapoport A, Terminal Care
Assessment of sleep in children with mucopolysaccharidosis type III
Tags: 2014, Actigraphy, Adolescent, Bigger B, Canal M, Case-Control Studies, characteristics, Child, Cross E, Female, Grant S, Hare D J, Humans, JL5DK93RCL (Melatonin), Jones S, Langford-Smith K, Lomax M, Mahon L V, Male, Melatonin/me [Metabolism], MPSIIIA, MPSIIIB, Mucopolysaccharidosis III/pp [Physiopathology], PLoS One, Preschool, sleep disturbance/disorders, Sleep/ph [Physiology], Time Factors, Trajectory, Wraith J E
Caregiver-Child Discrepancies in Reports of Child Emotional Symptoms in Pediatric Chronic Pain
Tags: 2020, Allyn KE, anxiety, Anxiety/epidemiology, April 2021 List, Caregivers, Child, Children, chronic and recurrent pain, Chronic Pain, Depression, Emotions, Female, Humans, informant discrepancies, Journal of Pediatric Psychology, Male, Martin SR, Pain Measurement, Parents, Payne LA, Quality Of Life, Seidman LC, Zeltzer LK
Parent moral distress in serious pediatric illness: A dimensional analysis
The prevalence and phenomenology of repetitive behavior in genetic syndromes
Tags: 2009, Adolescent, Adult, Angelman Syndrome/epidemiology/psychology, Arron K, behavioral problems, Berg K, Burbidge C, characteristics, Child, Child Preschool, Cri-du-chat, Cri-du-Chat Syndrome/epidemiology/psychology, De Lange syndrome, De Lange Syndrome/epidemiology/psychology, Female, Fragile X Syndrome/epidemiology/psychology, Humans, Intellectual Disability/epidemiology/genetics/psychology, Journal of Autism and Developmental Disorders, London, Male, Middle Aged, Moss J, Oliver C, Phenotype, Prader-Willi Syndrome/epidemiology/psychology, Prevalence, repetitive behavior, Stereotyped Behavior, Surveys And Questionnaires, Syndrome, tone and motor problems, Trajectory, Young Adult
The association between environmental events and self-injurious behaviour in Cornelia de Lange syndrome
Tags: 2005, Adolescent Child, Arron K, behavioral problems, characteristics, Child, De Lange syndrome, De Lange Syndrome/ep [Epidemiology], Environment, Female, Hall S, Humans, Journal Of Intellectual Disability Research, Male, Moss J, Oliver C, Petty J, Preschool, Self-Injurious behavior, Self-Injurious Behavior/di [Diagnosis], Self-Injurious Behavior/ep [Epidemiology], Self-Injurious Behavior/px [Psychology], Severity Of Illness Index, Sloneem J, Trajectory
Engaging Fathers in Pediatric Palliative Care Research
Tags: 2020, 2022 Special Edition 1 - Parent Perspectives, Barrera M, Beaune L, Belletrutti M, Blumberg J, Caregiver, Child, Child Health, Controlled Study, Father, Health Care Personnel, Ing S, Interview, Journal of social work in end of life & palliative care., Male, Nicholas D, Palliative Therapy, Pediatrics, Perception, Qualitative Research, Rapoport A, Wellbeing
Healthcare utilization and costs of pediatric home mechanical ventilation in Canada
Tags: 2020, Adult, Ambulatory Care/economics, Amin R, Canada, Caregivers/economics, Child, Child Preschool, Coyte PC, Female, Guerriere D, Health Care Costs, Health Expenditures, healthcare costs, healthcare utilization, Home Care Services/economics, home mechanical ventilation, Humans, Katz SL, long-term mechanical ventilation, Longitudinal Studies, Male, March 2021 List, McKim DA, Middle Aged, Nonoyama ML, Patient Acceptance of Health Care, Pediatric Pulmonology, Pediatrics, Prospective Studies, Quality Of Life, Respiration Artificial/economics, Rose L, Tracheostomy, ventilator assisted individual, Wasilewski M, Zagorski B
Behavioural phenotype of Cornelia de Lange syndrome: case-control study
Tags: 2008, Adolescent, Adult, Arron K, Autistic Disorder/psychology, behavioral problems, Case-Control Studies, characteristics, Child, Child Preschool, Communication Disorders/psychology, Compulsive Behavior/psychology, De Lange syndrome, De Lange Syndrome/psychology, Female, global behavior disorder, Hall S, Humans, Male, Oliver C, Phenotype, Sloneem J, Surveys And Questionnaires, The British Journal of Psychiatry, Trajectory, Young Adult
Parental assessment of comfort in newborns affected by life-limiting conditions treated by a standardized neonatal comfort care program
Tags: 2018, Adult, Byrne M, Daho M, Female, Foe G, Humans, Infant, Intensive Care, Journal Of Perinatology, Male, Neonatal/og [Organization & Administration], New York, Newborn, November 2019 List, Palliative Care/mt [methods], Parents/px [psychology], Parravicini E, Patient Care Team/og [Organization & Administration], Patient Comfort/st [Standards], Practice Guidelines As Topic, Prospective Studies, Qualitative Research, Steinwurtzel R, Surveys And Questionnaires, Young Adult
Key Findings of the Structures and Processes of Inpatient Pediatric Palliative Care Programs (S737)
Tags: 2020, Burnout, Child, Clergy, conference abstract, Controlled Study, Female, Friebert S, Health Care Delivery, Health Care System, Heitner R, Hospital Patient, Human, Journal of Pain and Symptom Management, Klick J, Major Clinical Study, Male, March 2020 List, Palliative Therapy, Physician, Practice Guideline, registered nurse, Rogers M, Social Worker, Williams C
Evaluation of End-of-Life Care Programs at Emily's House Children's Hospice
Functional and gait assessment in children and adolescents affected by Friedreich's ataxia: A one-year longitudinal study
Tags: 2016, Adolescent, Article, assessment of humans, Bella G D, Bertini E, Castelli E, characteristics, Child, Clinical Article, Controlled Study, Female, Friedreich's ataxia, functional assessment, Gait, Gait Analysis and the Scale for the Assessment and Rating of Ataxia, Gazzellini S, Human, Lispi M L, longitudinal study, Male, Petrarca M, Pisano A, PLoS One, Preschool Child, Reliability, step length, stride length, tone and motor problems, Trajectory, Vasco G, Walking, walking velocity, Zazza M
Enuresis and urinary incontinence in children and adolescents with spinal muscular atrophy
Tags: 2001, Adolescent, Backes M, BJU International, characteristics, Child, Enuresis/etiology/physiopathology, Female, Humans, Laufersweiler-Plass C, Male, Muscular Atrophy Spinal/complications/physiopathology, Nerve Degeneration/complications/physiopathology, Rudnik-Schoneborn S, SMA1, Trajectory, urinary incontinence, Urinary Incontinence/etiology/physiopathology, von Gontard A, Zerres K
Responsiveness of the motor function measure in neuromuscular diseases
Tags: 2012, Adolescent, Adult, Aged, Archives Of Physical Medicine And Rehabilitation, Berard C, Child, Disability Evaluation, Ecochard R, Female, Fermanian J, Girardot F, Humans, Iwaz J, Male, MFM, Middle Aged, Mobility Limitation, motor function measure, Motor Skills, Muscular Dystrophy Duchenne/physiopathology/rehabilitation, Neuromuscular Diseases/physiopathology/rehabilitation, Payan C, Perception, Physical Therapy Modalities, Prospective Studies, Q3 conditions, scale development, SMA1, tone and motor problems, tool development, Vuillerot C, Young Adult
Identifying as a Good Parent: Considering the Communication Theory of Identity for Parents of Children Receiving Palliative Care
Tags: 2021, 2022 Special Edition 2 - Parent Perspectives, Adolescence, Child, Communication, compassion, Conceptual Framework, Coping, Family Centered Care, Hecht ML, Hinds PS, Journal of Palliative Medicine, Kellas JK, Male, Palliative Care, Parental Attitudes, Parenting, Parents, Pediatric Care, Personality, Professional-family Relations, Social Identity, Stress, Support, Theoretical models, Weaver MS
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
Trends in the aggressiveness of pediatric cancer near the end-of-life
Tags: 2018, Adult, aggressiveness, Artificial Ventilation, Cancer Patient, Child, Childhood Cancer, conference abstract, Controlled Study, Death, Diagnosis, Female, Fushimi K, Hematologic Malignancy, Human, Intubation, Japan, Major Clinical Study, Male, Matsumoto K, Oncology 2019 List, Pediatric Blood and Cancer, Resuscitation, School Child, Shinjo D, Terminal Care, Yotani N, Young Adult
Are we on the same page? Exploring pediatric patients' involvement with advance care planning
Tags: 2023, Aasen ERHV, acquired immune deficiency syndrome, Adolescent, Adult, Advance Care Planning, Caregiver, Child, Cystic Fibrosis, Emotion, Female, Human, Journal of Pain and Symptom Management, June 2022 List, Lee A, Male, Medline, Neurology, oSovik ML, outcome assessment, Palliative Therapy, Patient Participation, pediatric patient, Randomized Controlled Trial (topic), Review, Stordal K, Systematic Review, Young Adult