Browse Items (5 total)
- Tags: Disease Burden
Palliative Care for Childhood Cancer
Tags: 2022, 2023 SE3 - Oncology, Advanced Cancer, Cancer Palliative Therapy, Cancer Patient, Cause Of Death, Child, Child Health Care, childhood cancer/th [Therapy], Children, collaborative care team, daily life activity, Disease Burden, Editorial, evidence based practice, Family, Health Care Access, health care need, Health Care Personnel, health care planning, Health Care Quality, Hematopoietic stem cell transplantation, Home Care, Hope, Hospital care, Human, illness trajectory, Medical Education, Michiels EM, Nausea, Netherlands, Nurse, Pain, Palliative Care, patient worry, personalized cancer therapy, Physician, Practice Guideline, Quality Of Life, Vomiting
Family-Centered Advance Care Planning: What Matters Most for Parents of Children with Rare Diseases
Tags: 2022, Adult, Advance Care Planning, Aoun SM, Article, attitude to illness, body movement, Caregiver, Child Care, Children, Cohort Analysis, collaborative care team, Content Analysis, Conversation, Disease Burden, Family Centered Care, Family Decision Making, Feasibility Study, Female, Fratantoni K, Human, Human Relation, July List 2023, Livingston J, Lyon ME, Palliative Therapy, Parent, Parental Attitude, pediatric patient, psychosocial care, Qualitative Analysis, Rare Disease, Schellinger SE, social connectedness, videorecording
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
Procedural burden experienced by children with cancer during their terminal hospital admission
Tags: 2019, acute respiratory failure, Adolescent, amputation, Article, Artificial Ventilation, bone marrow biopsy, Bone Marrow Transplantation, brain ventricle peritoneum shunt, Cancer Palliative Therapy, Central Nervous System Tumor, central venous catheter, Child, Childhood Cancer, Cohort Analysis, Corkum K S, craniotomy, debridement, Disease Burden, excision, fasciotomy, Female, Heart Arrest, heart surgery, Hebal F N, Hospital Admission, Human, intestine resection, invasive procedure, Journal Of Pediatric Surgery, laparoscopy, Lautz T B, Length Of Stay, Leukemia, lobectomy, Major Clinical Study, Male, myringotomy, Oncology 2019 List, Ostomy, Pain, Priority Journal, public health insurance, Retrospective Study, Rowell E E, segmentectomy, Sepsis, spine fusion, Stem Cell Transplantation, Terminal Care, thoracoscopy, Thoracotomy, vascular access, ventriculostomy
Guidance on forgoing life-sustaining medical treatment
Tags: 2017, Apparent Life Threatening Event/th [therapy], Article, Awareness, Boss RD, Caregiver, Carter BS, Child Abuse, Child Care, Christian CW, Clinical Decision Making, Comatose Patient, Consensus, Consultation, Critical Illness/th [therapy], Davies D, Death, Death By Neurologic Criteria, Dell ML, Developmental Disorder/th [therapy], Diekema DS, Disease Burden, Disease Course, Elster N, Ethical Decision Making, Extremely Low Gestational Age, Family Decision Making, Family Stress, Feudtner C, Flaherty EG, Fortson BL, Foster Care, Gavril AR, Gestational Age, Goal Attainment, Guinn-Jones M, Hauer JM, Health Belief, High Risk Population, Human, Humphrey LM, Hurley TP, Hydration, Idzerda SM, Imaizumi S, Imminent Death, Informed Consent, Intensive Care, Interpersonal Communication, Katz AL, Klick J, Klipstein S, Laskey A, Laventhal N, Legal Aspect, Legano LA, Leventhal JM, Life-sustaining Medical Treatment, Linebarger JS, Lord B, MacAuley RC, MacMillan H, Medical Ethics, Medical Expert, Medical Information, Medical Procedures, Medical Specialist, Medically Administered Nutrition And Hydration, Moon MR, Neglect, Neurologic Disease/di [diagnosis], November 2017 List, Nutrition, Okun AL, Opel DJ, Oxygenation, Pain/th [therapy], Palliative Therapy, Parker S, Patient Care Planning, Pediatrician, Pediatrics, Practice Guideline, Priority Journal, Prognosis, Quality Of Life, Resuscitation, Rivera F, shared decision making, Social Support, Spiritual Care, Statter MB, Stedt E, Survival, Teamwork, Terminal Care, Tissue Perfusion, Uncertain Prognosis, Weise KL