Browse Items (32 total)
- Tags: Life Expectancy
DMD-YOUNG: paediatric palliative care for children with a slowly progressive neuromuscular disorder in transition to adulthood
Tags: 2024, Adolescent, ADULTHOOD, Annexstad E, Child, conference abstract, Controlled Study, Coping, Coping Strategy Questionnaire, Duchenne Muscular Dystrophy, Employment, empowerment, February List 2025, housing, Human, Knowledge, Life Expectancy, Male, Medical Information, muscle function, Neuromuscular Disease, Neuromuscular Disorders, Nordstrom M, Norway, Palliative Therapy, Quality Of Life, Ramberg C, Rosenberger A, Social Behavior, social life, social network
Living with Pompe disease: results from a qualitative interview study with children and adolescents and their caregivers
Tags: 2024, Adolescent, Adult, Article, Caregiver, Child, Clinical Article, cognitive behavioral therapy, Content Analysis, content validity, Disease Severity, Dyspnea, Emotion, emotional appraisal, enzyme replacement, Fatigue, February List 2025, Female, glycogen storage disease type 2, Hahn A, Hennermann JB, Home Care, Huemer M, Human, inborn error of metabolism, Lagler FB, Landolt MA, Life Expectancy, Male, MAXQDA software, Moslinger D, Multicenter Study, Muscle Weakness, musculoskeletal pain, Orphanet Journal Of Rare Diseases, Pain, Pain Intensity, Palliative Therapy, Perception, Pfrimmer C, psychosocial care, Qualitative Analysis, Qualitative Research, Quality Of Life, Questionnaire, Rohrbach M, School Child, Semi Structured Interview, Severity Of Illness Index, social exclusion, Social Support, sore throat, Truninger MI, Vomiting, Werner H, Young Adult
New worlds open up': A qualitative study on Wonder Lab practices in Dutch paediatric palliative care with parents, healthcare professionals, and students
Tags: 2024, Adolescent, Adult, Article, Bereavement, care behavior, Caregiver, diving, Experience, Female, Geuze L, Goossensen A, Health Care Personnel, Human, Interview, Life Expectancy, Middle Aged, October List 2024, Palliative Therapy, Parent, Physician, Qualitative Research, Quality Of Life, Schrevel S, SSM - Qualitative Research in Health, Training, University Hospital, van Driesten - van Roozen P
PAEDIATRIC TO ADULT PALLIATIVE CARE - IS THERE A PRESCRIPTION FOR TRANSITION?
Tags: 2024, Adult, Archives of Disease in Childhood, Brown K, Child, conference abstract, Degenerative Disease, Drug Therapy, Health Care Personnel, Human, Life Expectancy, McCusker K, muscarinic receptor blocking agent, October List 2024, Palliative Therapy, prescription, Prevalence, Scotland, Seizure, Spasticity, Therapy, Young Adult
Stress Among Parents of Children With Severe Neurological Impairment in the Pediatric Intensive Care Unit
Tags: 2024, Adolescent, Adult, Article, Barton KS, Bogetz J, brain ventricle peritoneum shunt, Child, Child Parent Relation, Clinical Article, Cohort Analysis, confusion (uncertainty), Controlled Study, Disease Severity, ethnic background, Father, feeding tube, Female, Health Survey, Home Care, Hospital Admission, hospital discharge, Human, implanted vagus nerve stimulator, intrathecal baclofen pump, Journal of Palliative Medicine, legal guardian, Length Of Stay, Life Expectancy, Male, mortality risk, Neurodisability, noninvasive positive pressure ventilation, October List 2024, Oslin E, Palliative Therapy, Parental Stress, Patient Advocacy, Pediatric Hospital, Pediatric Intensive Care Unit, Personal Experience, Prospective Study, Qualitative Research, Quantitative Study, Rosenberg AR, Semi Structured Interview, Tracheostomy, Trowbridge A, United States, VULNERABILITY, Watson RS, Yi-Frazier J
People don't realise how much their past experiences affect them in adulthood': A qualitative study of adult siblings' experiences of growing-up with a sister/brother with a childhood life-limiting condition and their perceived support needs
Tags: 2024, Adolescent, Adult, ADULTHOOD, anxiety, Article, Brother, childhood, Depression, emotionality, family assessment, Female, Hospice, Human, hydrotherapy, Interview, Kirk S, Life Expectancy, Male, May List 2024, mental disease, Mental Health, nightmare, Palliative Medicine, Palliative Therapy, Pryjmachuk S, Psychotherapy, Qualitative Research, Quality Of Life, Questionnaire, Semi Structured Interview, Sibling, single parent, Sister, social network, Social Support, Terminal Care, Thematic Analysis
Assessment of a Mobile App by Adolescents and Young Adults With Cystic Fibrosis: Pilot Evaluation
Tags: 2019, Adolescence, Adolescent, Adult, Albrecht U V, Anthropometry, Article, Breathing, Child, chronic lung disease, Clinical Article, Controlled Study, Cystic Fibrosis, Disability, Dittrich A M, Dopfer C, February 2020 List, Female, Fuge J, Hansen G, Human, JMIR mHealth and uHealth, Junge S, Life Expectancy, life satisfaction, lung function, Male, mobile application, mobile phone, Nolte H, Pieper K, Quality Of Life, Questionnaire, responsibility, Ringshausen F C, Rudolf I, Sauer-Heilborn A, Self Care, Tummler B, von Jan U, Young Adult
Mortality in parents after the death of a child
Tags: 2019, Attitude To Death, Bereavement, Child Mortality, Floyd F J, Genetics, Greenberg J S, Heart Diseases -- Mortality, Human, January 2020 List, Life Expectancy, Mailick M R, Middle Age, Mortality -- Risk Factors, Parental Attitudes, Peer Group, Public Health, Social science & medicine, Song J, Twins, United States
Parental assessment of comfort in newborns affected by lifelimiting conditions treated by a standardized neonatal comfort care program
Tags: 2018, Adult, April 2018 List, Article, Byrne M, Child Parent Relation, Clinical Article, Daho M, Female, fluid intake, Foe G, Health Care Delivery, Health Care Quality, health program, Health Survey, Human, Infant, Infant Nutrition, Journal Of Perinatology, kangaroo care, Life Expectancy, life limiting disease, Male, Newborn, Newborn Care, Parental Attitude, parental behavior, Parravicini E, Patient Comfort, Peer Review, physical disease, Prospective Study, Self Report, standardization, Steinwurtzel R
What's Missing in Missing Data? Omissions in Survey Responses among Parents of Children with Advanced Cancer
Tags: 2014, Adolescent, Adult, Backlog, Disease Progression, Dussel V, Female, Feudtner C, Geyer JR, Humans, Journal Article, Journal of Palliative Medicine, Kang TI, Life Expectancy, Male, Neoplasms, Orellana L, Parents, prog, Prognosis, Quality Of Life, Questionnaires, Research, Rosenberg AR, surveys, Wolfe J
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
Neuropathic cancer pain: prevalence, severity, analgesics and impact from the European Palliative Care Research Collaborative-Computerised Symptom Assessment study
Tags: (EPCRC) European Palliative Care Research Collaborative, 2013, 80 And Over, Aass N, Adolescent, Adult, Aged, Analgesics, Backlog, Bennett MI, Caraceni A, Cross-sectional Studies, Fainsinger R, Female, Heitzer E, Hjermstad MJ, Humans, Journal Article, Kaasa S, Life Expectancy, Male, Middle Aged, Neoplasm Metastasis, Neoplasms, Neuralgia, Pain Measurement, Palliative Medicine, Prevalence, Quality Of Life, Rayment C, Strasser F, Symptom Assessment, Young Adult
An international/multicentre report on patients with cystic fibrosis (CF) over the age of 40 years
Tags: 2008, Adolescent Transitions, Adult, Age Distribution, Aged, Assael B, Backlog, Canada, Castellani C, Cohort Studies, Corey M, Cystic Fibrosis/complications/epidemiology/physiopathology, Dodge JA, Female, Hodson ME, Humans, International Study Of Aging In Cystic Fibrosis, Italy, Journal Article, Journal of Cystic Fibrosis, Life Expectancy, London, Longevity, Male, Middle Aged, Minnesota, Retrospective Studies, Sex Distribution, Simmonds NJ, Survival Rate, Tullis E, Warwick WJ
Predicting death in children
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
Enabling the transition to hospice through effective palliative care
Tags: 2005, Attitude To Death/ethnology, Backlog, Bomba PA, Case Management/organization & administration, Chronic Disease, Continuity of Patient Care/organization & Disease Progression, Hospice Care/organization & administration/psychology, Humans, Journal Article, Life Expectancy, Models, Needs Assessment, Organizational, Organizational Objectives, Palliative Care/organization & Professional Role, Prognosis, Quality Of Life, Referral and Consultation/organization & United States, The Case Manager
Estimates of life expectancy by adolescents and young adults with congenital heart disease
Tags: 2006, Adolescent, Adolescent Transitions, Adult, Attitudes, Awareness, Backlog, Barzel M, Congenital/epidemiology, Female, Health Behavior, Health Knowledge, Health Status, Heart Defects, Humans, Irvine MJ, Journal Article, Journal of the American College of Cardiology, Life Expectancy, Logistic Models, Male, McCrindle BW, Practice, Questionnaires, Reid GJ, Siu SC, Webb GD
On the elicitation of preferences for alternative therapies
Tags: 1982, Adult, Aged, Backlog, Choice Behavior, Decision Making, Humans, Journal Article, Life Expectancy, Lung Neoplasms/mortality/radiotherapy/surgery, Male, McNeil BJ, Middle Aged, Non-U.S. Gov't, Outcome And Process Assessment (health Care), P.H.S., Patient Participation, Pauker SG, Probability, Research Support, Sox HC, The New England Journal Of Medicine, Therapeutics, Tversky A, U.S. Gov't
Whose utilities for decision analysis?
Tags: 1990, Attitude Of Health Personnel, Attitude To Health, Backlog, Boyd NF, Choice Behavior, Colostomy/psychology, Cummings BJ, Decision Support Techniques, Game Theory, Heasman KZ, Humans, Journal Article, Life Expectancy, Medical Decision Making, Multivariate Analysis, Non-U.S. Gov't, Patient Participation/psychology, Patients/psychology, Physicians/psychology, Prognosis, Research Support, Sutherland HJ, Tritchler DL
Life expectancy among people with cerebral palsy in Western Australia
Tags: 2001, Adolescent, Adult, Backlog, Badawi N, Blair E, Cause Of Death, Cerebral Palsy/mortality/pathology, Child, Delivery of Health Care, Developmental Medicine and Child Neurology, Disabled Persons, Epidemiologic Studies, Female, Humans, Intelligence, Journal Article, Life Expectancy, Male, Middle Aged, Non-U.S. Gov't, Research Support, Stanley FJ, Survival Analysis, Watson L, Western Australia/epidemiology
Reduced life expectancy in 40 cases of early onset cerebellar ataxia with retained tendon reflexes: a population-based study
Tags: 1993, Acta Neurologica Scandinavica, Adolescent, Adult, Aged, Backlog, Cerebellar Ataxia/genetics/mortality/physiopathology, Child, Chio A, Chromosome Aberrations/genetics, Chromosome Disorders, Female, Follow-up Studies, Genes, Humans, Italy/epidemiology, Journal Article, Life Expectancy, Male, Middle Aged, Mortara P, Neurologic Examination, Orsi L, Outcomes, Preschool, Recessive/genetics, Reflex, Schiffer D, Spinocerebellar Degenerations/genetics/mortality/physiopathology, Stretch/genetics/physiology, Survival Analysis, Survival Rate
Test-retest reliabilities of two treatment-preference instruments in measuring utilities
Tags: 1993, Adult, Aged, Backlog, de Haes HJ, Decision Making, Female, Humans, Journal Article, Kiebert GM, Kievit J, Leer JW, Life Expectancy, Male, Medical Decision Making, Middle Aged, Neoplasms/radiotherapy/surgery, Non-U.S. Gov't, Patients/psychology, Quality Of Life, Research Support, Stiggelbout AM
Life expectancy of children in vegetative and minimally conscious states
Tags: 2000, Adolescent, Ashwal S, Backlog, Brain Injuries/mortality, Child, Day SM, Enteral Nutrition/mortality, Female, Gastrostomy/mortality, Human, Journal Article, Life Expectancy, Logistic Models, Male, Multivariate Analysis, Non-U.S. Gov't, Odds Ratio, Pediatric Neurology, Persistent Vegetative State/mortality, Preschool, Risk Factors, Shavelle RM, Strauss DJ, Support, Survival Analysis
Effect of severity of disability on survival in north east England cerebral palsy cohort
Tags: 2000, Archives of Disease in Childhood, Backlog, Birth Weight, Cause Of Death, Cerebral Palsy/mortality, Cohort Studies, Colver AF, Disability Evaluation, England/epidemiology, Female, Human, Hutton JL, Infant, Journal Article, Life Expectancy, Life Style, Mackie PC, Male, Newborn, Non-U.S. Gov't, Prognosis, Risk Factors, Sex Distribution, Support, Survival Rate
Life expectancy of children with cerebral palsy
Tags: 1998, Activities of Daily Living, Anderson TW, Backlog, California/epidemiology, Cerebral Palsy/mortality, Child, Cohort Studies, Confidence Intervals, Eating, Feeding Methods, Female, Human, Infant, Journal Article, Life Expectancy, Likelihood Functions, Male, Motor Skills, Pediatric Neurology, Preschool, Proportional Hazards Models, Risk Factors, Shavelle RM, Strauss DJ, Survival Analysis
Survival estimates of severely disabled children
Tags: 1998, Adolescent, Adult, Aged, Backlog, Bias (Epidemiology), California/epidemiology, Child, Disabled Children/classification/statistics & numerical data, Disabled Persons/classification/statistics & numerical data, Eyman RK, Female, Grossman HJ, Human, Journal Article, Life Expectancy, Male, Middle Age, Nervous System Diseases/diagnosis/mortality, Pediatric Neurology, Preschool, Survival Rate
Attitudes on pain and opioid prescription practices in cystic fibrosis centers
Tags: 2017, 53663-61-9 (opiate), 8002-76-4 (opiate), 8008-60-4 (opiate), Adult, Analgesia, anxiety, Child, Chronic Pain, cyst, Cystic Fibrosis, drug combination, Female, Hollatz T, Human, January 2018 List, Laxova A, Life Expectancy, Male, Meyer KC, Mood, Mukadam Z, Nurse, Opiate, opiate addiction, Palliative Therapy, Pediatric Pulmonology, prescription, Prevalence, Quality Of Life, Questionnaire, sinus headache, thorax wall, Yang Y
Preferences of advanced cancer patients for communication on anticancer treatment cessation and the transition to palliative care
Tags: 2017, Advanced Cancer, Cancer Localization, Cancer Patient, Cancer Therapy, Child, Diagnosis, Distress Syndrome, Doctor Patient Relation, Female, Fujimori M, Human, Kinoshita H, Life Expectancy, Major Clinical Study, Male, Matsushima E, Medical Record, Multiple Regression, Oncology 2017 List, Palliative Therapy, Paternalism, Psycho-Oncology, Symptom, Uchitomi Y, Umezawa S
Palliative Care in Obstetrics and Gynecology
Tags: 2016, Advance Care Planning, August 2017 List, Communication, Female, Genital Neoplasms Female/complications/psychology/ Therapy, Humans, Infant Newborn, Journal Of Obstetrics And Gynecology, Lefkowits C, Life Expectancy, Mood Disorders/etiology/therapy, Nausea/therapy, Pain Management, Pain/etiology, Palliative, Perinatal Care, Solomon C
Physician-assisted Dying For Children Is Conceivable For Most Dutch Paediatricians, Irrespective Of The Patient's Age Or Competence To Decide
Pediatric Cardiology Provider Attitudes About Palliative Care: A Multicenter Survey Study
Tags: 2017, Balkin E M, Blume E D, Cardiac Surgeon, Cardiologist, Child, Clinical Study, Clinical Trial, Controlled Clinical Trial, Controlled Study, Female, Heart Failure, Human, Intensivist, Kaufman BD, Kirkpatrick J N, Life Expectancy, Male, Medical School, Multicenter Study, Palliative Therapy, Pediatric Cardiology, Pediatric cardiology., September 2017 List, Skill, Sleeper L A, Swetz K M, Terminal Care, Wolfe J
Family-oriented Palliative Care: Parents' Perspective And Experience
Tags: 2016, Brain Damage, Child, Chromosome Disorder, Chromosome Disorders, Complication, Controlled Study, Dyspnea, Family Study, Gene Deletion, Hospice, Hospital, Human, June 2017 List, Length Of Stay, Life Expectancy, Medical Service, Metabolic Disorder, Neuromuscular Disease, Neuropediatrics, Only Child, Pain, Palliative Care, Palliative Therapy, Pietz J, Quality Of Life, Seizure, Spasticity, Spiritual Care, Symptom