Browse Items (16 total)
- Tags: Human Tissue
Caregiver-reported impact on quality of life and disease burden in patients diagnosed with metachromatic leukodystrophy: Results of an online survey and a qualitative interview
Tags: 2020, Adolescent, Adult, April 2020 List, biomedical technology assessment, Bone Marrow Transplantation, Calcagni C, Caregiver, Child, Clinical Article, conference abstract, Controlled Study, Disease Burden, enzyme replacement, European Quality of Life 5 Dimensions Questionnaire, Female, Follow Up, France, Germany, Howie K, Human, Human Tissue, Infant, Institutional Review, Interview, investment, juvenile, Male, Metachromatic Leukodystrophy, Molecular Genetics and Metabolism, Multicenter Study, Palliative Therapy, Pang F, Patient Advocacy, Patient Care, preliminary data, Quality Of Life, Recall, Sample Size, Shapovalov Y, Walz M, Wellbeing, Wilds A
Family attitudes toward genomic sequencing in children with cardiac disease
Tags: 2020, April 2020 List, Char D, Child, conference abstract, Confidentiality, consumer, Controlled Study, Deuitch N, Family Attitudes, family planning, Gal D, genetic discrimination, Grounded Theory, Health Care System, heart center, Heart Diseases -- Mortality, Human, Human Tissue, Insurance, interrater reliability, Journal Of Investigative Medicine, Magnus D, Perception, Privacy, Prognosis, Resource Allocation, Semi Structured Interview, sequence analysis, Surgery, Tang R, Transplantation, Trust, Uncertainty
Palliative care utilization in hospitalized children with cancer
Tags: 2020, Aged, Article, brain cancer, cancer model, Cheng B T, Child, Childhood Cancer, Cohort Analysis, Controlled Study, Female, Hospital Admission, hospital cost, Hospital Mortality, Hospitalization, Hospitalized Child, Human, Human Tissue, Length Of Stay, Major Clinical Study, Male, mortality risk, Oncology 2019 List, Palliative Therapy, Pediatric Blood and Cancer, Physician, Public Health, Resource Allocation, Wangmo T
Frequency and Clinical Characteristics Associated With Pediatric Deaths In a Tertiary Hospital in a Developing Country - Opportunities for Pediatric Palliative Care
Tags: 2018, antibiotic therapy, Artificial Ventilation, Brain Death, Cause Of Death, Child, Clinical Feature, Comfort, conference abstract, Controlled Study, Cuervo Suarez M I, Demography, developing country, Developing World 2019 List, Diagnosis, Drug Withdrawal, Female, Garcia X, Health Care Quality, Hospital Patient, Human, Human Tissue, inotropism, Journal of Pain and Symptom Management, Life Sustaining Treatment, Major Clinical Study, Male, Medical Record, Munoz M, Neonatal Intensive Care Unit, Newborn, Palliative Therapy, pediatric patient, Resuscitation, Retrospective Study, Sedation, statistical analysis, Terminal Care, tertiary care center
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]
Dysphagia in Rett Syndrome: A Descriptive Study
Tags: 2017, Adolescent, Annals of Otology, Rhinology and Laryngology, apraxia, Bronchitis, Caregiver, characteristics, Child, Cocca S, Complication, De Felice C, Deterioration, Diagnosis, drug fatality, Dysphagia, Feeding, feeding difficulties, Female, hand movement, Human, Human Tissue, Livi W, Major Clinical Study, Mezzedimi C, neuropsychiatry, Normal Human, Otorhinolaryngology, Prevention, progressive feeding deterioration, Psychosexual Development, Rett syndrome, Speech, tongue, Trajectory
Attempting to Define Clinical Productivity Metrics among Pediatric Palliative Care Services at Academic Children's Hospitals
Tags: 2019, Article, billing and coding, Brook I, Burnout, Child, Clinical Article, clinical productivity, Convenience Sample, Female, Fossa M, Human, Human Tissue, Journal of Palliative Medicine, Kang T, Leadership, Mahoney D P, Male, October 2019 List, Palliative Therapy, Pediatric Palliative Care, productivity, Program Development, sustainability, United States, workload
The experiences of bereaved family caregivers with advance care planning for children with medical complexity
Tags: 2019, Advance Care Planning, Amin R, Caregiver, Child, Clinical Article, Cohen E, conference abstract, Consultation, Content Analysis, Conversation, Death, Female, genetic transcription, Health Care Personnel, Hellman J, Human, Human Tissue, Informed Consent, Lord S, Male, Moore C, Netten K, October 2019 List, Orkin J, Paediatrics and Child Health (Canada), Perception, Personal Experience, Rappaport A, Semi Structured Interview
Who should discuss goals of care during acute deteriorations in patients with life threatening illnesses? A survey of clinicians from diverse pediatric specialties
Tags: 2019, Advanced Cancer, brain disease, Cancer Patient, cancer resistance, Child, Clinician, conference abstract, Controlled Study, Cote A J, Data Analysis Software, Decision Making, Deterioration, disease exacerbation, E-mail, Emergency Ward, Female, Gaucher N, Human, Human Tissue, Hypoplastic Left Heart Syndrome, Leukemia, Likert scale, Major Clinical Study, Male, nonparametric test, October 2019 List, Paediatrics and Child Health (Canada), Palliative Therapy, Payot A, Pediatrician, Perception, respiratory distress, Spinal Muscular Atrophy, vignette
Prevalence and Incidence of Anxiety and Depression among Children, Adolescents, and Young Adults with Life-Limiting Conditions: A Systematic Review and Meta-analysis
Tags: 2019, Adolescent, Adult, anxiety, Article, Barker MM, Beresford B, Bland M, Child, data extraction, Depression, Embase, Female, Fraser LK, Human, Human Tissue, Incidence, Interview, JAMA Pediatrics., Male, Medline, meta analysis, Monitoring, Organisation for Economic Co-operation and Development, Prevalence, psychologic assessment, Psycinfo, Regression Analysis, September 2019 List, synthesis, Systematic Review, Young Adult
Parental experiences of end of life care decision-making for children with life-limiting conditions in the paediatric intensive care unit: A qualitative interview study
Tags: 2019, Advance Care Planning, Article, Bmj Open, Child, Clinical Article, Coad J, Dale J, Death, Decision Making, Female, genetic transcription, Hill E, Human, Human Tissue, Interview, July 2019 List, Male, Mitchell S, national health service, Nonverbal Communication, paediatric palliative care, Palliative Care, Palliative Therapy, Pediatric Intensive Care Unit, Pediatrics, Plunkett A, Spry J L, Thematic Analysis
Exploring the vagueness of Religion & Spirituality in complex pediatric decision-making: A qualitative study
Tags: 2018, Article, Barfield RC, BMC Palliative Care, Brandon DH, Child, Decision Making, Docherty SL, Father, genetic transcription, Health Care Personnel, Human, Human Tissue, Intensive Care, Interview, Life Sustaining Treatment, Major Clinical Study, Male, Medical Record, Mother, Narrative, Neonatology, November 2018 List, Palliative Therapy, Prognosis, Qualitative Research, Religion, Superdock AK, Thematic Analysis, Treatment Withdrawal
The needs of parents during end-of-life care for terminally ill child
Tags: 2018, August 2018 List, Child, Clinical Article, conference abstract, Data Analysis, Death, Father, Female, Genetic Disorder, genetic transcription, Grounded Theory, Human, Human Tissue, Identity, immune deficiency, Interview, Leukemia, Loucka M, Male, Mother, Palliative Medicine, Palliative Therapy, Polakova K, Qualitative Research, risk factor, solid malignant neoplasm, Terminal Care, terminally Ill Patient
What do transplant physicians think about palliative care? A national survey study
Tags: 2017, Adult, Blood, bone marrow, Burns LJ, Caregiver, Child, conference abstract, Denzen E, El-Jawahri A, Female, friend, Graft Recipient, graft versus host reaction, hematologic disease, Hematopoietic stem cell transplantation, Hispanic, Hospice, Human, Human Tissue, LeBlanc TW, Male, March 2018 List, Mau LW, medical oncologist, Meyer CL, outpatient care, Palliative Therapy, Patient Referral, Perception, Petersdorf E, Questionnaire, Roeland EJ, Trust, United States, Wood WA