Browse Items (195 total)
- Tags: Longitudinal Studies
Progressive sensorineural hearing loss in children with mitochondrial encephalomyopathies
Tags: 2001, Acoustic Impedance Tests, Acoustic/ph [Physiology], Adolescent, Adult, Audiometry, Auditory, Backlog, Brain Stem/ph [Physiology], Child, Evoked Potentials, Female, Friedreich Ataxia/di [Diagnosis], Friedreich Ataxia/pp [Physiopathology], Hearing Loss, Humans, IM, Journal Article, Kearns-Sayer Syndrome/di [Diagnosis], Kearns-Sayer Syndrome/pp [Physiopathology], Laryngoscope, Longitudinal Studies, Male, MELAS Syndrome/di [Diagnosis], MELAS Syndrome/pp [Physiopathology], Mitochondrial Encephalomyopathies/di [Diagnosis], Mitochondrial Encephalomyopathies/pp [Physiopathology], Otoacoustic Emissions, Preschool, Pure-Tone, Reflex, Sensorineural/di [Diagnosis], Sensorineural/pp [Physiopathology], Speech, Spontaneous/ph [Physiology], Wilichowski E, Zwirner P
A longitudinal method of teaching pediatric palliative care to interns: preliminary findings regarding changes in interns' comfort level
Tags: 2010, Adult, Attitude Of Health Personnel, Attitude To Death, Backlog, Chung PJ, Curriculum/standards, Documentation/standards, Evan E, Female, Humans, Internship And Residency, Journal Article, Longitudinal Studies, Male, Palliative & Supportive Care, Palliative Care/methods, Pediatrics/education, Professional Competence, Professional-family Relations, Professional-patient Relations, Questionnaires, Roubinov D, Teaching/methods, Yazdani S, Young Adult, Zeltzer L
Natural history of trisomy 13
Tags: 1994, Adult, Archives of Disease in Childhood, Backlog, Burn J, Chromosomes, Congenital/diagnosis/genetics/mortality, England/epidemiology, Female, Fetal Diseases/diagnosis, Heart Defects, Human, Humans, Hunter S, Incidence, Infant, Journal Article, Longitudinal Studies, Male, Neural Tube Defects/diagnosis/genetics/mortality, Newborn, Pair 13, Pregnancy, Prenatal Diagnosis, Syndrome, Trisomy, Wright MJ, Wyllie JP
WHO Definition of Palliative Care.
Cornerstone care for families of children with life-threatening illness.
Tags: 1991, Adaptation, Backlog, Baum JD, Brain Diseases/psychology/therapy, Child, Continuity Of Patient Care, Developmental Medicine and Child Neurology, Family/psychology, Forrest GC, Grief, Home Nursing/psychology, Hospices, Humans, Journal Article, Longitudinal Studies, Neuromuscular Diseases/psychology/therapy, Patient Care Team, Professional-family Relations, Psychological, Public Assistance, Sick Role, Social Support, Stein A, Terminal Care/psychology, Woolley H
Symptoms and Suffering at the End of Life in Children with Cancer
Tags: 2000, Anorexia/etiology/therapy, Backlog, Boston, Child, Children's Hospital (Boston), Clodronate, Constipation/etiology/therapy, Dana-Farber Cancer Institute (Boston), Death and Euthanasia, Diarrhea/etiology/therapy, Dyspnea/etiology/therapy, Ellenbogen JM, Emanuel EJ, Empirical Approach, Fatigue/etiology/therapy, Grier Holcombe E, Health Care Surveys, home care services, Humans, Journal Article, Klar Neil, Levin SB, Logistic Models, Longitudinal Studies, Neoplasms/complications/therapy, New England Journal Of Medicine, Non-U.S. Gov't, Oncology at EOL, P.H.S., Pain/etiology/therapy, Palliative Care/standards/statistics & Numerical Data, Parents, Physicians, Professional Patient Relationship, Psychological, Quality Of Health Care, Quality Of Life, Questionnaires, Research Support, Salem-Schatz S, Stress, Terminal Care, U.S. Gov't, Weeks Jane C, Withholding Treatment, Wolfe J
Proxy-Reported Quality of Life and Family Impact for Children Followed Longitudinally by a Pediatric Palliative Care Team
Tags: 2018, Analysis of Variance, April 2018 List, Article, Attention, Bace S, Child, daily life activity, Darnall C, Diagnosis, Female, Human, Journal of Palliative Medicine, Longitudinal Studies, longitudinal study, Macfadyen A, Major Clinical Study, Male, Metronidazole, minimal clinically important difference, Only Child, Palliative Care, Palliative Therapy, physical model, Prospective Study, Quality Of Life, Statistical Significance, Vail C, Weaver M, Wichman C
The natural history of type B Niemann-Pick disease: Results from a 10-year longitudinal study.
Tags: 2004, Adolescent, Adult, Backlog, Blood Cell Count, Child, Desnick RJ, Disease Progression, Female, Genotype, Hossain S, Humans, Hypersplenism/etiology, Journal Article, Lamm C, Leukopenia/etiology, Lipids/blood, Liver/physiopathology, Longitudinal Studies, Male, McGovern MM, Middle Aged, Niemann-Pick Diseases/blood/complications/genetics/physiopathology, Pediatrics, Phenotype, Preschool, Q3 Scoping Review Results, Respiratory Physiology, Schuchman EH, Splenomegaly/etiology, Thrombocytopenia/etiology, Wallenstein S, Wasserstein MP
Outcome at age 4 years in offspring of women with maternal phenylketonuria: the Maternal PKU Collaborative Study
Tags: 2000, AIM, Allred E, Azen C, Backlog, Chang PN, Child, Child Behavior, Cipcic-Schmidt S, Cognition, de la Cruz F, Developmental Disabilities, Developmental Disabilities/di [Diagnosis], Developmental Disabilities/et [Etiology], Female, Hall R, Hanley W, Humans, IM, JAMA, Journal Article, Koch R, Levy HL, Logistic Models, Longitudinal Studies, Male, Matalon R, Nanson J, Phenylketonurias/dh [Diet Therapy], Phenylketonurias/pp [Physiopathology], Pregnancy, Pregnancy Complications/dh [Diet Therapy], Pregnancy Outcome, Preschool, Psychological Tests, Rouse B, Shifrin H, Trefz F, Waisbren SE
Predictors of burden in spouse caregivers of individuals with Alzheimer's disease
Tags: 1991, Activities of Daily Living/psychology, Adaptation, Aged, Alzheimer Disease/psychology/therapy, Anger, Anxiety/psychology, Backlog, Depression/psychology, Female, Follow-up Studies, Hostility, Humans, Journal Article, Longitudinal Studies, Maiuro RD, Male, Marriage/psychology, Mental Status Schedule/statistics & numerical data, P.H.S., Personal Satisfaction, Personality Assessment/statistics & Psychometrics, Psychological, Psychology And Aging, Research Support, Russo J, Sick Role, Teri L, U.S. Gov't, Vitaliano PP, Young HM
Impaired health-related quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL 4.0 Generic Core Scales
Tags: 2007, Adolescent, Age Factors, Backlog, Burwinkle TM, Case-Control Studies, Child, Chronic Disease/classification/epidemiology/psychology, Cluster Analysis, Disabled Children/psychology, Female, Health And Quality Of Life Outcomes, Humans, Journal Article, Limbers CA, Longitudinal Studies, Male, Pediatrics/instrumentation, Preschool, Proxy, Psychometrics/instrumentation, Quality Of Life/psychology, Self Disclosure, Severity Of Illness Index, Sickness Impact Profile, Varni JW, World Health
Follow-up on seven adult patients with mild Sanfilippo B-disease.
Tags: 1987, Adult, Age Factors, American Journal Of Medical Genetics, Backlog, Dementia/complications/genetics, Female, Follow-up Studies, Humans, Journal Article, Longitudinal Studies, Male, Mental Retardation/complications/genetics, Mucopolysaccharidoses/genetics, Mucopolysaccharidosis III/genetics, Pedigree, van de Kamp JJ, van Schrojenstein-de Valk HM
Niemann-Pick disease type C: Two cases and an update.
Tags: 2000, Adolescent, Age of Onset, Backlog, Cells, Cholesterol/metabolism, Cultured, Diagnosis, Differential, Disease Progression, Esterification, Female, Fibroblasts/metabolism, Humans, Jankovic J, Journal Article, Longitudinal Studies, Male, Middle Aged, Movement Disorders: Official Journal Of The Movement Disorder Society, Niemann-Pick Diseases/diagnosis/physiopathology, Skin/pathology, Uc EY, Wenger DA
Place of death: preferences among cancer patients and their carers
Tags: 2004, 80 And Over, Adult, Aged, Attitude To Death, Backlog, Caregivers/psychology, Clark D, Cohort Studies, Comparative Study, Female, Great Britain, Hospice Care/standards/trends, Humans, Journal Article, Location Of Death, Longitudinal Studies, Male, Middle Aged, Morris SM, Neoplasms/mortality/therapy, Non-U.S. Gov't, Patient Satisfaction, Research Support, Social science & medicine, Terminally Ill, Thomas C
The posttraumatic growth inventory: measuring the positive legacy of trauma.
Tags: 1996, Adaptation, Adolescent, Adult, Backlog, Calhoun LG, Female, Gender Identity, Humans, Interpersonal Relations, Journal Article, Journal Of Traumatic Stress, Life Change Events, Longitudinal Studies, Male, Personality Development, Personality Inventory/statistics & numerical data, Philosophy, Post-Traumatic/diagnosis/psychology/rehabilitation, Psychological, Self Concept, Social Perception, Stress Disorders, Tedeschi RG
Toward family-centered inpatient medical care: The role of parents as participants in medical decisions.
Tags: 2007, Adolescent, Adult, Backlog, Child, Christakis DA, Consumer Participation, Data Collection, Decision Making, Family Nursing, Female, Hospitalization, Humans, Journal Article, Logistic Models, Longitudinal Studies, Lozano P, Male, Middle Aged, Multivariate Analysis, Parents/psychology, Self Efficacy, Tarini BA, The Journal Of Pediatrics
Magnetic resonance spectroscopy in Niemann-Pick disease type C: Correlation with diagnosis and clinical response to cholestyramine and lovastatin.
Tags: 1994, Arnold DL, Backlog, Brain/drug effects/metabolism/pathology, Cholesterol, Cholestyramine/administration & dosage/adverse effects, Chromosome Aberrations/genetics, Chromosome Disorders, Combined Modality Therapy, Dietary/administration & dosage, Follow-up Studies, Genes, Humans, Infant, Journal Article, Lipid Metabolism, Longitudinal Studies, Lovastatin/administration & dosage/adverse effects, Magnetic Resonance Imaging, Magnetic Resonance Spectroscopy, Male, Neuropsychological Tests, Niemann-Pick Diseases/diagnosis/drug therapy/genetics, Pediatric Neurology, Recessive/genetics, Schreiber R, Scriver CR, Shevell MI, Sylvain M
Aromatic L-amino acid decarboxylase deficiency: overview of clinical features and outcomes
Tags: 2003, Age of Onset, Annals Of Neurology, Aromatic-L-Amino-Acid Decarboxylases/cerebrospinal fluid/deficiency/genetics, Autonomic Nervous System Diseases/genetics/physiopathology, Backlog, Child, Consanguinity, Female, Hemodynamics/physiology, Humans, Hyland K, Infant, Journal Article, Longitudinal Studies, Magnetic Resonance Imaging, Male, McKenna CE, Movement Disorders/genetics/physiopathology, Nervous System Diseases/cerebrospinal fluid/genetics/physiopathology, Newborn, Nitroprusside/diagnostic use, Pedigree, Preschool, Q3 Scoping Review Results, Saul JP, Speller NB, Swoboda KJ, Treatment Outcome, Vasodilator Agents/diagnostic use
How couples cope with the death of a twin or higher order multiple
Liver transplantation for Wilson's disease: long-term results and quality-of-life assessment
Tags: 2003, Adolescent, Adult, Backlog, Child, Dhawan A, Female, Graft Survival, Heaton ND, Hepatolenticular Degeneration/pp [Physiopathology], Hepatolenticular Degeneration/su [Surgery], Humans, IM, Immunosuppression/ae [Adverse Effects], Journal Article, Liver Transplantation, Liver Transplantation/ae [Adverse Effects], Liver Transplantation/mo [Mortality], Liver/pp [Physiopathology], Longitudinal Studies, Maguire DD, Male, Mieli-Vergani G, Muiesan P, O'Grady JG, Quality Of Life, Rela M, Survival Analysis, Sutcliffe RP, Transplantation
Perceptions of inadequate health care and feelings of guilt in parents after the death of a child to a malignancy: a population-based long-term follow-up.
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
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
Health outcomes of bereavement.
Tags: 2007, Backlog, Journal Article, Longitudinal Studies, Schut H, Stroebe M, The Lancet
Late infantile neuronal ceroid lipofuscinosis: quantitative description of the clinical course in patients with CLN2 mutations
Tags: 2002, American Journal Of Medical Genetics, Backlog, DNA Mutational Analysis, DNA/chemistry/genetics, Endopeptidases, Goebel HH, Heim P, Journal Article, Kohlschutter A, Longitudinal Studies, Meyer K, Mutation, Neuronal Ceroid-Lipofuscinoses/genetics/pathology/physiopathology, Peptide Hydrolases/genetics/metabolism, Psychomotor Performance/physiology, Seizures/physiopathology, Severity Of Illness Index, Steinfeld R, Ullrich K, Vision/physiology, von Gregory H
Life threatening illness and hospice care.
Tags: 1989, Adolescent, Archives of Disease in Childhood, Attitude To Health, Backlog, Baum JD, Bereavement, Child, Consumer Satisfaction, Employment, Family Health, Forrest GC, Hospices, Humans, Journal Article, Longitudinal Studies, Marriage, Mental Disorders/psychology, Non-U.S. Gov't, Parents, Preschool, Professional-family Relations, Research Support, Respite Care, Retrospective Studies, Social Support, Stein A, Terminal Care/psychology, Woolley H
Impact on parents when a child has a progressive, life-threatening illness.
Experiences of families in which a child has a prolonged terminal illness: modifying factors.
The positive impact of children with an intellectual disability on the family.
Equivalence reliability of the functional independence measure for children (WeeFIM) administration methods.
Tags: 1997, Activities of Daily Living, Backlog, Braun SL, Cerebral Palsy/rehabilitation, Child, Developmental Disabilities/rehabilitation, Disability Evaluation, Down Syndrome/rehabilitation, Female, Humans, Infant, Interviews As Topic, Journal Article, Lane SJ, Longitudinal Studies, Male, Nochajski S, Observer Variation, Ottenbacher KJ, Preschool, Psychometrics, Reproducibility of Results, Sperle PA, The American Journal Of Occupational Therapy.: Official Publication Of The American Occupational Therapy Association
Maternal anxiety and depression, poverty and marital relationship factors during early childhood as predictors of anxiety and depressive symptoms in adolescence
Tags: 2002, Adolescent, Anxiety/epidemiology/psychology, Backlog, Bor W, Child, Depression/epidemiology/psychology, Divorce/psychology, Humans, Infant, Journal Article, Journal Of Child Psychology And Psychiatry, And Allied Disciplines, Logistic Models, Longitudinal Studies, Marriage/psychology, Mothers/psychology, Najman JM, O'Callaghan MJ, Parent caregivers, Poverty, Preschool, Queensland/epidemiology, Risk Factors, Sex Factors, Spence SH, Study Design, Williams GM
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
Predictors of distress in parents of children with cancer: a prospective study.
Tags: 2000, Adaptation, Adolescent, Backlog, Child, Cost Of Illness, Depression/diagnosis/drug therapy/psychology, Female, Humans, Internal-External Control, Journal Article, Journal of Pediatric Psychology, Longitudinal Studies, Male, Neoplasms, Non-U.S. Gov't, Parent-child Relations, Parents/psychology, Prospective Studies, Psychological, Psychological/psychology, Questionnaires, Research Support, Sloper P, Social Adjustment, Social Support, Stress
Mapping the journey of cancer patients through health care system. Part 1: developing the research question
Tags: 2004, Adaptation, Attitude To Health, Backlog, Blood P, Canadian Oncology Nursing Journal, Clinch J, Data Collection, Delivery of Health Care/standards, El Sayed S, Humans, Journal Article, Khoo K, Longitudinal Studies, Manitoba, Motivation, Nemecek A, Neoplasms/diagnosis/psychology/therapy, Non-U.S. Gov't, Nursing, Nursing Methodology Research/methods, Philosophy, Psychological, Research Design, Research Support, Scott-Findlay S, Sloan JA, Trylinski C, Whittaker H
Designing and implementing a longitudinal study of children with neurological, genetic or metabolic conditions: charting the territory
The boy who refused an IV: a case report of subcutaneous clodronate for bone pain in a child with Ewing Sarcoma
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