Browse Items (195 total)
- Tags: Longitudinal Studies
Barriers to palliative care for children: Perceptions of pediatric health care providers
Scoring evaluation of the natural course of mucopolysaccharidosis type IIIA (Sanfilippo syndrome type A)
Tags: 2007, Adolescent, Adult, Backlog, Braulke T, Child, Cohort Studies, Disease Progression, Female, Gal A, Humans, Infant, Journal Article, Kossow K, Longitudinal Studies, Male, Meyer A, Mucopolysaccharidosis III/classification/diagnosis/pathology, Muhlhausen C, Muschol N, Newborn, Pediatrics, Preschool, Q3 Scoping Review Results, Questionnaires, Research Design, Ullrich K
Parent-reported quality of life of children with cerebral palsy in Europe.
Conducting End-of-Life Studies in Pediatric Oncology
Tags: 2007, Backlog, Burghen E, Clinical Nursing Research, dying children and adolescents, end-of-life research, Hinds PS, Humans, Journal Article, Longitudinal Studies, Oncologic Nursing/ethics, Oncology at EOL, Pediatric Nursing, Pediatric Oncology, Pediatrics, Pritchard M, Reproducibility of Results, Terminal Care, Western Journal of Nursing Research
Robert Latimer's day
The boy in the moon.
WHO Definition of Palliative Care.
The clinical and demographic characteristics of nonneuronopathic Gaucher disease in 887 children at diagnosis
Tags: 2006, Adolescent, AIM, Andersson HC, Anemia/et [Etiology], Archives Of Pediatrics & Adolescent Medicine, Backlog, Bone Diseases/et [Etiology], Child, Female, Gaucher Disease/co [Complications], Gaucher Disease/di [Diagnosis], Growth Disorders/et [Etiology], Hepatomegaly/et [Etiology], Humans, IM, Infant, Journal Article, Kacena KA, Kaplan P, Longitudinal Studies, Male, Newborn, Preschool, Q3 Scoping Review Results, Splenomegaly/et [Etiology], Thrombocytopenia/et [Etiology], Yee JD
Clinical characteristics and survival of trisomy 18 in a medical center in Taipei, 1988-2004.
Tags: 2006, Abnormalities, Adult, American Journal Of Medical Genetics.Part A, Backlog, Birth Weight, Brain Diseases/ultrasonography, Chang JH, Chen MR, Chen YJ, Child, Child Health Services/economics/organization & administration/statistics & numerical data, Chromosomes, Congenital/ultrasonography, Female, Gestational Age, Heart Defects, Ho CS, Hospitals, Hsu CH, Huang FY, Human, Humans, Hung HY, Infant, Journal Article, Kao HA, Karyotyping, Lee HC, Lin DS, Lin HY, Lin SP, Longitudinal Studies, Male, Maternal Age, Middle Aged, Multiple/genetics/mortality/pathology, Newborn, Pair 18/genetics, Paternal Age, Pregnancy, Prenatal Diagnosis, Preschool, Retrospective Studies, Shyur SD, Survival Analysis, Survival Rate, Taiwan, Time Factors, Trisomy/diagnosis/genetics, Ultrasonography/methods
Neonatal management of trisomy 18: Clinical details of 24 patients receiving intensive treatment.
Tags: 2006, American Journal Of Medical Genetics.Part A, Baba A, Backlog, Birth Weight, Cause Of Death, Children W/SNI, Chromosome Disorders/genetics/mortality/therapy, Chromosomes, Female, Fetal Diseases/diagnosis/genetics, Fukushima Y, Gestational Age, Human, Humans, Infant, Journal Article, Kawame H, Kosho T, Longitudinal Studies, Male, Nakamura T, Newborn, Pair 18/genetics, Pregnancy, Prenatal Diagnosis, Prognosis, Survival Analysis, Survival Rate, Tamura M, Trisomy/diagnosis/genetics
Clinical and biochemical spectrum of D-bifunctional protein deficiency
Tags: 2006, 3-Hydroxyacyl CoA Dehydrogenases/deficiency, Annals Of Neurology, Backlog, Barth PG, Blood Chemical Analysis, Boltshauser E, Bone and Bones/anatomy & histology/pathology, Brain/anatomy & histology/pathology, Child, Cohort Studies, Dekker C, Denis S, Duran M, Enoyl-CoA Hydratase/deficiency, Ferdinandusse S, Fibroblasts/cytology/metabolism, Gartner J, Humans, Inborn Errors, Infant, Isomerases/deficiency, Journal Article, Kidney/anatomy & histology/pathology, Life Expectancy, Lipid Metabolism, Liver/anatomy & histology/pathology, Longitudinal Studies, Macaya A, Magnetic Resonance Imaging, Majoie CB, Mooyer PA, Multienzyme Complexes/deficiency, Peroxisomal Disorders/classification/pathology/physiopathology, Poll-The BT, Preschool, Questionnaires, Soorani-Lunsing RJ, Wanders RJ
Trisomy 18 in neonates: prenatal diagnosis, clinical features, therapeutic dilemmas and outcome
Tags: 2006, Abnormalities, Backlog, Bober K, Central Nervous System/abnormalities, Chromosomes, Congenital/diagnosis/genetics/therapy, Female, Goc B, Heart Defects, Human, Humans, Infant, Journal Article, Journal Of Applied Genetics, Krzystolik-Ladzinska J, Longitudinal Studies, Multiple/diagnosis/genetics/mortality/therapy, Newborn, Pair 18, Poland/epidemiology, Pregnancy, Prenatal Diagnosis, Prognosis, Retrospective Studies, Swietlinski J, Trisomy, Walencka Z, Wiecek-Wlodarska D, Wloch A, Wojciechowska E
Biochemical, clinical and molecular findings in LCHAD and general mitochondrial trifunctional protein deficiency
Tags: 2005, Acyl-CoA Dehydrogenase, Andresen BS, Backlog, Bischoff C, Bonham JR, Cardiomyopathies/diagnosis/genetics, Carnitine/analogs & derivatives/metabolism, Chakrapani A, Clark S, Downing M, Exons, Fatty Acids/metabolism, Fibroblasts/metabolism, Gregersen N, Homozygote, Humans, Inborn Errors/diagnosis/genetics, Journal Article, Journal Of Inherited Metabolic Disease, Lipid Metabolism, Long-Chain/deficiency, Longitudinal Studies, Male, Manning NJ, Mitochondria/pathology, Multienzyme Complexes/deficiency, Muntoni F, Mutation, Olpin SE, Olsen RK, Phenotype, Polyneuropathies/diagnosis/genetics, Pourfarzam M, Prognosis, Rhabdomyolysis/diagnosis/genetics, Sharrard M, Turnbull DN
Sleep disturbances in aspartylglucosaminuria (AGU): a questionnaire study.
Tags: 2006, Acetylglucosamine/analogs & derivatives/urine, Adolescent, Adult, Backlog, Child, Children W/SNI, Female, Heiskala H, Humans, Inborn Errors/complications/pathology, Journal Article, Journal Of Inherited Metabolic Disease, Kaski M, Kivinen S, Laakso ML, Lindblom N, Longitudinal Studies, Male, Metabolism, Middle Aged, Preschool, Prevalence, Questionnaires, Sleep Disorders/complications/diagnosis
Recruitment and retention in a longitudinal palliative care study.
Tags: 2005, Acquired Immunodeficiency Syndrome/therapy, Adult, Applied Nursing Research, Backlog, Caregivers, Clinical Nursing Research/organization & administration, Data Collection, et al, Feasibility Studies, Female, Focus Groups, Humans, Journal Article, Longitudinal Studies, Male, McSherry CB, Middle Aged, Neoplasms/therapy, Palliative Care, Parkas V, Patient Care Team, Patient Dropouts, Patient Selection, Sherman DW
A retrospective, multinational, multicenter study on the natural history of infantile-onset Pompe disease
Tags: 2006, Artificial, Backlog, Cohort Studies, Corzo D, Disease Progression, Europe/epidemiology, Female, Glycogen Storage Disease Type II/complications/epidemiology/therapy, Humans, Hwu WL, Infant, Infantile-Onset Pompe Disease Natural History Study Group, Israel/epidemiology, Journal Article, Kishnani PS, Longitudinal Studies, Male, Mandel H, Newborn, Nicolino M, North America/epidemiology, Respiration, Retrospective Studies, Survival Rate, Taiwan/epidemiology, The Journal Of Pediatrics, Yong F
The natural history of medium-chain acyl CoA dehydrogenase deficiency in the Netherlands: clinical presentation and outcome
Tags: 2006, Acyl-CoA Dehydrogenase/deficiency/genetics, Adolescent, Adult, Backlog, Child, Cohort Studies, Derks TG, Disease Progression, Gerver WJ, Humans, Inborn Errors/complications/diagnosis/genetics, Infant, Journal Article, Longitudinal Studies, Metabolism, Middle Aged, Mutation/genetics, Netherlands, Newborn, Preschool, Prognosis, Reijngoud DJ, Retrospective Studies, Sauer PJ, Severity Of Illness Index, Smit GP, The Journal Of Pediatrics, van den Berg MP, Waterham HR
A scale to monitor progression and treatment of mitochondrial disease in children.
Tags: 2006, Adolescent, Backlog, Bugiani M, Child, Disability Evaluation, Disease Progression, Elson JL, Female, Great Britain, Humans, Infant, Journal Article, Longitudinal Studies, Male, McFarland R, Mitochondrial Diseases/diagnosis/therapy, Mitochondrial Encephalomyopathies/diagnosis/therapy, Morava E, Neurology/methods, Neuromuscular Disorders, Newborn, Observer Variation, Pediatrics/methods, Phoenix C, Predictive Value of Tests, Preschool, Prognosis, Q3 Scoping Review Results, Reproducibility of Results, Schaefer AM, Smeitink JA, Turnbull DM, Uziel G
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
Hospitalization for mental illness among parents after the death of a child.
Tags: 2005, Adult, Backlog, Bereavement, Child, Comparative Study, Death, Female, Follow-up Studies, Hospitalization/statistics & numerical data, Hospitals, Humans, Infant, Journal Article, Laursen TM, Li J, Life Change Events, Longitudinal Studies, Male, Mental Disorders/epidemiology, Middle Aged, Mood Disorders/epidemiology, Mortensen PB, Non-U.S. Gov't, Olsen J, Parents/psychology, Precht DH, Preschool, Psychiatric, Registries, Regression Analysis, Research Support, Risk, Schizophrenia/epidemiology, Sex Factors, Substance-Related Disorders/epidemiology, The New England Journal Of Medicine
Perceived stress in HIV-infected individuals: Physiological and psychological correlates.
Tags: 2006, Adaptation, Adolescent, Adult, Aged, AIDS care, Anxiety Disorders - psychology, Backlog, Depressive Disorder/psychology, Dudgeon WD, Female, Hand GA, HIV Infections/psychology, Humans, Journal Article, Longitudinal Studies, Male, Middle Aged, Perception, Phillips KD, Psychiatric Status Rating Scales, Psychological, Psychological/psychology, South Carolina, Stress
Posttraumatic growth in mothers of children with acquired disabilities.
Emerging strategies for the treatment of hereditary metabolic storage disorders.
Tags: 1-Deoxynojirimycin/analogs & derivatives/therapeutic use, 2006, Backlog, Bone Marrow Transplantation, Brady RO, Enzyme Inhibitors/therapeutic use, Fabry Disease/therapy, Gangliosidosis, Gaucher Disease/therapy, Gene Therapy, GM1/therapy, Humans, Imino Sugars/therapeutic use, Journal Article, Longitudinal Studies, Piperidines/therapeutic use, Rejuvenation Research
Constructing a prospective model of psychosocial adaptation in young adolescents with spina bifida: an application of optimal data analysis
Tags: 2006, Adaptation, Adolescent, Adolescent Transitions, Backlog, Body Image, Bryant FB, Child, Coakley RM, Conflict (Psychology), Educational Status, Family/psychology, Female, Holmbeck GN, Humans, Individuation, Intelligence, Journal Article, Journal of Pediatric Psychology, Longitudinal Studies, Male, Models, Motivation, Parents/psychology, Prospective Studies, Psychological, Psychological/complications, Self Concept, Sick Role, Social Adjustment, Social Behavior, Spinal Dysraphism/psychology, statistical, Stress
Early integration of pediatric palliative care: For some children, palliative care starts at diagnosis.
The psychosocial well-being of children with chronic disease, their parents and siblings: an overview of the research evidence base.
Tags: 2006, Adaptation, Backlog, Barlow JH, Child, Child: Care, Health and Development, Children W/SNI, Chronic Disease/psychology/rehabilitation, Ellard DR, Evidence-based Medicine, Family Health, Humans, Journal Article, Literature review, Longitudinal Studies, Mental Disorders/etiology, Meta-Analysis, Parents/psychology, Psychological, Siblings/psychology
Gastrostomy tube feeding in children with cerebral palsy: a prospective, longitudinal study
Tags: 2005, Adolescent, Alder N, Anthropometry/methods, Bachlet AM, Backlog, Body Height/physiology, Cerebral Palsy/classification/nursing/surgery, Child, Child Development/physiology, Demography, Developmental Medicine and Child Neurology, Eltumi M, Enteral Nutrition/methods, Female, Gastrostomy/methods, Grant HW, Head/growth & development, Humans, Infant, Journal Article, Juszczak E, Lambert B, Longitudinal Studies, Male, McLean L, Newborn, Nutritional Status/physiology, Preschool, Retrospective Studies, Sullivan P, Thomas AG, Time Factors, Treatment Outcome, Vernon-Roberts A, Weight Gain/physiology
Does gastrostomy tube feeding in children with cerebral palsy increase the risk of respiratory morbidity?
Tags: 2006, Adolescent, Archives of Disease in Childhood, Backlog, Cerebral Palsy/therapy, Child, Eltumi M, Female, Gastrostomy/adverse effects, Grant H, Home, Humans, Infant, Journal Article, Longitudinal Studies, Lung Diseases/etiology, Male, Morrice JS, Non-U.S. Gov't, Parenteral Nutrition, Preschool, Research Support, Risk Assessment/methods, Sullivan P, Thomas AG, Vernon-Roberts A
Risperidone treatment of autistic disorder: longer-term benefits and blinded discontinuation after 6 months
Tags: 2005, Adolescent, Aggression/drug effects/psychology, Antipsychotic Agents/adverse effects/therapeutic use, Autism Network Research Units on Pediatric Psychopharmacology, Autistic Disorder/diagnosis/drug therapy/psychology, Backlog, Child, Child Behavior Disorders/diagnosis/drug therapy/psychology, Drug Administration Schedule, Female, Humans, Journal Article, Longitudinal Studies, Male, Personality Inventory, Placebos, Preschool, Psychiatric Status Rating Scales, Risperidone/adverse effects/therapeutic use, Self-Injurious Behavior/diagnosis/drug therapy/psychology, Substance Withdrawal Syndrome/diagnosis/psychology, The American Journal Of Psychiatry, Treatment Outcome
Family focused grief therapy: a randomized, controlled trial in palliative care and bereavement
Tags: 2006, Adult, Backlog, Bereavement, Bloch S, Caregivers/psychology, Depressive Disorder/therapy, Family Health, Family Relations, Family Therapy/methods, Family/psychology, Female, Follow-up Studies, Grief, Humans, Journal Article, Kissane DW, Longitudinal Studies, Male, McKenzie DP, McKenzie M, Middle Aged, Moskowitz C, O'Neill I, Palliative Care, Personality Inventory, Psychological/therapy, Social Adjustment, SSHRC CURA, Stress, Terminal Care, The American Journal Of Psychiatry, Treatment Outcome
Research with bereaved parents: A question of how not why.
Tags: 2006, Adult, Aroni R, Attitude, Backlog, Bauld C, Bereavement, Child, Ethics, Female, Humans, Hynson JL, Interview, Journal Article, Longitudinal Studies, Male, Palliative Care, Palliative Medicine, Parents/psychology, Preschool, Psychological, Research, Research Subjects/psychology, Sawyer SM
Posttraumatic growth and HIV bereavement: Where does it start and when does it end?
Health-related quality of life among child and adolescent survivors of childhood cancer.
Tags: 2006, Adolescent, Backlog, Barrera M, Canada, Case-Control Studies, Central Nervous System Neoplasms/psychology, Child, Cranial Irradiation/adverse effects, Female, Health Status, Humans, Journal Article, Journal Of Clinical Oncology, Leukemia/psychology, Longitudinal Studies, Lymphoma/psychology, Male, Maunsell E, Morrison HI, Neoplasms/psychology/therapy, Quality Of Life, Shaw AK, Speechley KN, Survivors