Browse Items (5 total)
- Tags: Chromosome Disorder
The Pediatric Palliative Care Quality Network: Palliative Care Consultation and Patient Outcomes
Tags: 2023, 2025 SE1 - Oncology, Adolescent, Advance Care Planning, Article, Benchmarking, Bogetz JF, Child, Chromosome Disorder, Clinician, Consultation, Diagnosis, Distress Syndrome, Dyspnea, Fatigue, Friedrichsdorf SJ, Hospital Pediatrics, Hospitalization, Human, Length Of Stay, Male, O'Riordan DL, Pain, Palliative Therapy, Pantilat SZ, Patient Referral, Postier AC, psychosocial care, Purser L, Root MC, solid tumor, Total Quality Management, Treatment Outcome
Parent Narratives Provide Perspectives on the Experience of Care in Trisomy 18
Tags: 2024, Adult, American Journal of Medical Genetics, Part C: Seminars in Medical Genetics, Anderson R, Article, Bierer R, Carey J, Child, Chromosome Disorder, Clinical Article, Content Analysis, Diagnosis, Down Syndrome, Edwards syndrome, Female, heart surgery, Human, Infant Mortality, Male, Mladucky J, Narrative, November List 2024, Parent, Patient Comfort, Personal Experience, Qualitative Research, Quality Of Life, rearing, shared decision making, support group, Therapy, Trisomy 13, Trisomy 18
Patterns of Care at the End of Life for Children and Young Adults with Life-Threatening Complex Chronic Conditions
Tags: 2017, Balkin Emily M, brain disease, central nervous system disease, Child, Chromosome Disorder, Comfort, Death, DeCourcey DD, Drug Withdrawal, Female, Human, Intensive Care Unit, January 2018 List, Life Sustaining Treatment, Lung Disease, Major Clinical Study, Male, Medical Record, Oladunjoye A, Palliative Therapy, Resuscitation, Silverman M, Study Design, Terminal Care, The Journal Of Pediatrics, Wolfe J, Young Adult
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
Mechanical Ventilation In Children With Life-limiting Conditions
Tags: 2016, Adult, Artificial Ventilation, Cancer Epidemiology, Cantero EQ, Carro CC, Cerebral Palsy, Child, Chromosome Disorder, Cognitive Defect, Controlled Study, Cross-sectional Studies, Cross-sectional Study, Death, European Respiratory Journal, Follow Up, Gaboli M, Garrido MM, Human, Lung Disease, Major Clinical Study, May 2017 List, Mucopolysaccharidosis, Neuromuscular Disease, Only Child, Palliative Care, Palliative Therapy, Pecellin ID, Quality Of Life, Respiration Artificial, Respiratory Insufficiency, Rodriguez LMR, Spain, University Hospital, Valencia JPG, Ventilators Mechanical, Young Adult
