Browse Items (49 total)
- Tags: Follow Up
The Practical Application of the Individual Care Plan for Pediatric Palliative Care: A Mixed-Method Study
Tags: 2024, Adult, Advance Care Planning, Aris-Meijer JL, Article, Caregiver Support, Child, Children, Clinical Article, Clinical Decision Making, Cross-sectional Study, Family Centered Care, Female, Follow Up, Health Care Personnel, health care planning, Hofman SC, Hospitalization, Human, illness trajectory, Interpersonal Communication, Joren CY, Kars MC, Kremer LCM, Likert scale, Male, mobile application, Mortality, November List 2024, Palliative Therapy, Perception, person centered care, Questionnaire, Rippen-Wagner H, Schuiling-Otten MA, Semi Structured Interview, shared decision making, Slingerland-Blom R, Terminal Care, Thematic Analysis, van der Velden C, Verhagen AAE
Context of death and end-of-life decision-making in paediatric patients with neurological conditions
Tags: 2023, Adolescent, Adult, Advance Care Planning, Age, Aguirre IA, Article, brain tumor/th [Therapy], Carmona-Nunez A, Cerebral Palsy/th [Therapy], Child, Controlled Study, Death, Demographics, Echaniz JS, Follow Up, Hospital Admission, Human, hypoxic ischemic encephalopathy/th [Therapy], Intensive Care Unit, Irazabal GM, Lopez-Bayon J, Major Clinical Study, Medical Decision Making, Medicina Paliativa, Murguiondo MI, neurologic disease/th [Therapy], October List 2024, Palliative Therapy, patient coding, pediatric patient, Pejenaute IS, Preschool Child, Retrospective Study, Sarriegui AZ, Terminal Care, Treatment Withdrawal, ward
Outpatient Pediatric Palliative Care Development: Guidance on Building Sustainable Programs
Tags: 2024, Adult, Article, Autrey AK, Child, Content Analysis, Female, Follow Up, Human, James C, Journal of Palliative Medicine, Kaye EC, Leadership, Miller EG, Morvant A, Mothi SS, Normal Human, October List 2024, Outpatient, Palliative Therapy, Patient Referral, Program Development, Stafford C, United States, workflow
Permanent cutaneous vesicostomy: a pragmatic approach to safely manage lower urinary tract dysfunction in pediatric patients with chronic and life-limiting conditions and neuropathic bladders
Tags: 2024, Abdelmaguid N, Adolescent, Al Saeedi A, antibiotic agent, antibiotic prophylaxis, Article, bladder catheterization, bladder irrigation, bladder stone, Cerebral Palsy, Child, chronic life-limiting disease, Clinical Effectiveness, conservative treatment, Controlled Study, cutaneous vesicostomy, cystostomy, encephalomyelitis, Female, Follow Up, Frontiers in Pediatrics, Gross Motor Function Classification System, Human, Hydrocephalus, hydronephrosis, hydroureter, hypoxic ischemic encephalopathy, Khalil IA, Long Term Care, lower urinary tract dysfunction (LUTD), lower urinary tract symptom, Major Clinical Study, Male, Meningomyelocele, Mohamed RB, Muneer E, nephrolithiasis, neurogenic bladder, neurogenic bladder dysfunction, Neuromuscular Disease, neuropathic bladder, occult spinal dysraphism, Palliative Therapy, Patient Safety, Pippi Salle JL, Polypharmacy, postoperative complication, Postoperative Period, pragmatic trial, Preschool Child, quadriplegia, recurrent infection, Retrospective Study, School Child, September List 2024, Spinal Muscular Atrophy, stenosis, stoma, urinary tract infection, Vallasciani S, vesicostomy
Hospitalization- and death-related financial and employment effects in parents of children with life-limiting conditions: a fixed-effects analysis
Tags: 2024, Accommodation, Adolescent, Adult, Article, Bereavement, Bergstrasser E, Child, Cohort Analysis, Controlled Study, Death, Employment, European Journal of Pediatrics, Father, Female, Fink G, Follow Up, Gerber AK, Hospitalization, Human, leisure, Length Of Stay, Major Clinical Study, Male, medical leave, Mitterer S, Palliative Therapy, Parent, personal income, return to work, September List 2024, Simon M, travel, Zimmermann K
Parent Preferences and Experiences in Advance Care Planning in the Neonatal Intensive Care Unit
Tags: 2024, Advance Care Planning, American Journal of Perinatology, Article, August List 2024, Caregiver, Controlled Study, Cost Effectiveness Analysis, Cross-sectional Study, Cummings C, DeCourcey DD, Emotional Stress, Female, Follow Up, Health Care Cost, Hospital Anxiety and Depression Scale, Human, Infant, Intensive Care Unit, Lin M, Major Clinical Study, Neonatal Intensive Care Unit, Palliative Therapy, Patient Preference, psychiatrist, Quality Of Life, Questionnaire, Resuscitation, Sayeed S, Social Support, Terminal Care, Vitcov G, Williams D, Wolfe J
Advance Care Planning and Parent-Reported End-of-Life Outcomes in the Neonatal Intensive Care Unit
Tags: 2024, acquired immune deficiency syndrome, Adult, Advance Care Planning, American Journal of Perinatology, Article, August List 2024, bleeding, Brain Damage, Caregiver, Central Nervous System, cerebrospinal fluid drainage system, Child, climate change, Clinical Decision Making, Cross-sectional Study, Cummings C, Death, DeCourcey DD, End Of Life, Follow Up, Gestational Age, Health Care Personnel, Human, Human Immunodeficiency Virus, Infant, infection, Kidney Failure, Lin M, Medical Care, multiple organ failure, Neonatal Intensive Care Unit, Newborn, Quality Of Life, respiratory failure, Sayeed S, Social Support, Terminal Care, Tracheostomy, Vitcov G, Williams D, Wolfe J
Pediatric palliative care for metabolic diseases: 20-year epidemiological survey of outpatients at a Brazilian quaternary hospital
Tags: 2024, Article, Barbosa SMDM, Bueno C, Child, Cohort Analysis, Controlled Study, Data Analysis Software, disease surveillance, do Nascimento AG, energy deficiency type metabolic disorders, Female, Follow Up, Freitas E, Henrique AC, Human, Journal Of Inherited Metabolic Disease, July List 2024, Kok F, Long Term Care, Major Clinical Study, Male, Metabolic Diseases, metabolic disorder/di [Diagnosis], metabolic disorder/ep [Epidemiology], Metabolism, Outpatient, Palliative Care, Palliative Therapy, PASW statistics 25.0 software, Pathology, pathophysiology, patient monitoring, pediatric patient, Pediatrics, Polastrini RTV, Prevalence, Pugliese C, Retrospective Study, sphingolipidosis, Spolador GM, Zoboli I
A Review of pediatric Palliative Care Program in a Regional Hospital in ong Kong
Tags: 2021, Adolescent, Aged, Bereavement Support, BMJ Paediatrics Open, Child, Chromosome Aberration, Clinical Article, community support, conference abstract, congenital disorder, Congenital Malformation, do not resuscitate order, Drug Therapy, Emergency Ward, endocrinologist, Female, Follow Up, Gastrostomy, Hong Kong, Human, Intensive Care Unit, Intensivist, July List 2024, Kwong CH, Lee TYH, Li CH, limited mobility, Male, Man SS, Medical Record Review, Metabolic Disorder, Morbidity, Neonatal Intensive Care Unit, Neonatologist, Neurologic Disease, neurologist, Noninvasive Ventilation, nose feeding, Oncologist, Pain, Palliative Care, Palliative Therapy, Patient Referral, Pediatric Intensive Care Unit, pediatric ward, Pediatrician, perinatal morbidity, Quality Of Life, Therapy, Tracheostomy
Advance Care Planning for Children With Rare Diseases: A Pilot RCT
Tags: 2024, Adolescent, Adult, Advance Care Planning, Aged, anxiety, Aoun S, Article, Beck Anxiety Inventory, Brodie N, care behavior, Caregiver, Caregiver Burden, Child, Clark H, Controlled Study, Detwiler K, Diagnosis, Distress Syndrome, Female, Follow Up, Fraser JL, Functional Assessment of Chronic Illness Therapy, Guerrera MF, Health Care Utilization, household income, Human, intention to treat analysis, July List 2024, Lyon ME, Major Clinical Study, Male, Needs Assessment, Pediatrics, Pilot Study, Poverty, poverty level, Quality Of Life, Randomized Controlled Trial, Rare Disease, Religion, Single Blind Procedure, Therapy, Thompkins JD, Torres C, Trujillo Rivera EA, Younge T
Understanding and Optimizing Rest and Rejuvenation for Family Caregivers of Children with Medical Complexity
Tags: 2024, Adult, Caregiver, Caregiver Support, Child, Clinician, conceptual model, conference abstract, Content Analysis, Controlled Study, coronavirus disease 2019, Family, Fatigue, Female, Follow Up, household, Human, Interview, Journal of Pain and Symptom Management, June List 2024, Palliative Therapy, Participant Observation, Porter AS, Qualitative Analysis, rejuvenation, Respite Care, rest, Semi Structured Interview, task shifting, ubiquinol cytochrome c reductase
Effect of Family Centered Pediatric Advance Care Planning for Children with Rare Diseases on Meaning/Peace
Tags: 2024, Adult, Advance Care Planning, Aged, anxiety, Beck Anxiety Inventory, care behavior, Caregiver, Caregiver Burden, Child, conference abstract, Controlled Study, Conversation, Decision Making, Diagnosis, Disability, Distress Syndrome, emergency department visit, Family, Female, Follow Up, Health Care Utilization, Hospitalization, household income, Human, intention to treat analysis, Journal of Pain and Symptom Management, June List 2024, Lyon ME, Male, Metabolic Disorder, Needs Assessment, Palliative Therapy, Patient Care, pediatric patient, Poverty, poverty level, Quality Of Life, Randomized Controlled Trial, Rare Disease, Religion, shared decision making, social determinants of health, spiritual well-being, Surgery, Therapy
Improving Pediatric Residents' Comfort and Facility with End-of-Life Care with a Just-In-Time Online Module
Tags: 2024, Child, Cicozi K, Comfort, conference abstract, Controlled Study, Ernest EP, Follow Up, Foreman K, Human, Humphrey LH, Jenkins R, Journal of Pain and Symptom Management, June List 2024, knowledge base, Likert scale, Nicholson A, Palliative Therapy, Simulation, Terminal Care, Total Quality Management, workflow
Finnish children who needed long-term home respiratory support had severe sleep-disordered breathing and complex medical backgrounds
Tags: 2024, Acta Paediatrica, acute respiratory failure, adenoid hypertrophy, adenotonsillectomy, Adolescent, angiotensin receptor antagonist/pv [Special Situation for Pharmacovigilance], anxiety, apnea hypopnea index, April List 2024, Article, aspiration pneumonia/co [Complication], Asthma, automatic positive airway pressure, beta 2 adrenergic receptor stimulating agent/ih [Inhalational Drug Administration], beta 2 adrenergic receptor stimulating agent/pv [Special Situation for Pharmacovigilance], beta adrenergic receptor blocking agent/pv [Special Situation for Pharmacovigilance], brain hypoxia, Brain Tumor, cardiovascular agent/pv [Special Situation for Pharmacovigilance], central nervous system disease, central sleep apnea syndrome/th [Therapy], Child, childhood obesity, choana atresia/su [Surgery], Clinical Feature, Clinical Outcome, Cohort Analysis, Comorbidity, Continuous Positive Airway Pressure, Controlled Study, corticosteroid/ih [Inhalational Drug Administration], corticosteroid/pv [Special Situation for Pharmacovigilance], craniofacial malformation, craniofacial surgery, cranioplasty, Data Analysis Software, Demographics, Developmental delay, developmental disorder, diaphragm hernia, dipeptidyl carboxypeptidase inhibitor/pv [Special Situation for Pharmacovigilance], Disease Severity, Down Syndrome, Eskola V, Female, Finn (citizen), Follow Up, Home Care, Human, hypoventilation/th [Therapy], Icd-10, Infant, invasive ventilation, Jarvela M, Katila M, laryngomalacia, Lauhkonen E, Le Fort III osteotomy, Long Term Care, lung hypoplasia, Major Clinical Study, Makinen R, Male, Mandelin P, mask/am [Adverse Device Effect], maxilla hypoplasia/co [Complication], medical device complication/co [Complication], montelukast/pv [Special Situation for Pharmacovigilance], Multidisciplinary team, nasal mask, Neuromuscular Disease, noninvasive positive pressure ventilation, nose obstruction/co [Complication], obstructive sleep apnea/th [Therapy], Only Child, onset age, orthodontic procedure, Palliative Therapy, Pneumonia, Polysomnography, psychological aspect, respiratory care, Respiratory Distress Syndrome, Retrospective Study, Saarenpaa-Heikkila O, skin irritation/co [Complication], Sleep Apnea Syndromes, Sleep Apnea Syndromes/th [Therapy], sleep disorder/co [Complication], Sleep Disorders, SPSS version 28.00, steroid/pv [Special Situation for Pharmacovigilance], Tonsillectomy, tonsillotomy, Tracheostomy, treatment duration, University Hospital
PRECIOUS demonstrated satisfactory measurement properties for assessing the quality of care for children with serious illnesses
Tags: 2024, Adolescent, Adult, Amin Z, Ang FJL, April List 2024, Article, Bun Cheung Y, Caregiver Support, Child, convergent validity, correlation coefficient, Cristelle Chow CT, Cronbach alpha coefficient, exploratory factor analysis, Female, Finkelstein EA, Follow Up, Gandhi M, Hanim Buang SN, Heng Chong P, Hospitalization, Human, Internal Consistency, Journal Of Clinical Epidemiology, Major Clinical Study, Male, Malhotra C, Malhotra R, Ostbye T, Palliative Therapy, person centered care, psychometry, root mean squared error, Teresa Tan SZ, test retest reliability, Tewani K, Therapy
Parents' participation in collegial meetings to discuss withholding or withdrawing treatment for their newborn: Working to improve information-sharing
Tags: 2024, Adult, advisory committee, Archives de Pediatrie, Boize P, Borrhomee S, Child, Conference Paper, Decision Making, Female, Follow Up, Garner Y, Grief, Human, Infant Newborn, Information Dissemination, Life Sustaining Treatment, March List 2024, Neaud E, Newborn, Parent, Refusal To Participate, Retrospective Study, Terminal Care, Withholding Treatment
Palliative Care in Children with Inherited Metabolic Diseases: Why does it matter?
Tags: 2023, Article, Bereavement Support, Cancelinha C, Child, Cohort Analysis, communication disorder, Diogo L, drug combination, Emergency Ward, emotional support, Endocrine, Metabolic and Immune Disorders - Drug Targets, enteric feeding, February List 2024, Female, Ferreira S, Follow Up, Grilo E, Home Care, Hospital Admission, Hospitalization, Human, Intensive Care, Male, medical device, Metabolic Disorder, motor dysfunction, Neurologic Disease, Nogueira A, Noninvasive Ventilation, Palliative Therapy, Patient Referral, Pereira MJ, Place Of Death, respiratory equipment, Retrospective Study, School Child, Symptom Assessment
The burden and scope of childhood cancer in displaced patients in Jordan: The King Hussein Cancer Center and Foundation Experience
Tags: 2023, 2023 SE5 - Low Resource Setting, Article, bone sarcoma, Brain Tumor, cancer center, Cancer Patient, Cancer Registry, Child, Childhood Cancer, drug cost, Female, Follow Up, Foundations, Frontiers in Oncology, Health Care Cost, Human, Iraqi, Jeha S, Jordan, Jordanian, Leukemia, Lymphoma, Major Clinical Study, Male, Mansour A, Nababteh M, Neoplasms, Overall Survival, Palliative Therapy, Public Health, refugee, retinoblastoma, Rihani R, Rodriguez-Galindo C, Social Support, Sultan I, Syrian, Yemeni
Real World Presentation and Treatment Outcomes with a Predominant Induction Chemotherapy Based Approach in Nasopharyngeal Carcinoma: A Sixteen Year Report from a Teaching Hospital in India
Tags: 2023, 2023 SE5 - Low Resource Setting, adjuvant therapy, Adolescent, Adult, Aged, albumin/ec [Endogenous Compound], Anemia, antiemetic agent, Article, Bahadur S, Bhasker S, Biswas A, bone metastasis, Cancer Investigation, Cancer Recurrence, Cancer Staging, capecitabine/dt [Drug Therapy], carboplatin/cb [Drug Combination], carboplatin/dt [Drug Therapy], cervical lymph node, chemoradiotherapy, Child, cisplatin/ae [Adverse Drug Reaction], cisplatin/cb [Drug Combination], cisplatin/dt [Drug Therapy], cisplatin/to [Drug Toxicity], cobalt therapy, Cohort Analysis, cranial nerve paralysis, cyclophosphamide/cb [Drug Combination], cyclophosphamide/dt [Drug Therapy], date of death, Diarrhea, diplopia, distant metastasis, docetaxel/cb [Drug Combination], docetaxel/dt [Drug Therapy], dysphasia, epirubicin/cb [Drug Combination], epirubicin/dt [Drug Therapy], exophthalmos, febrile neutropenia, Female, fluorouracil/cb [Drug Combination], fluorouracil/dt [Drug Therapy], Follow Up, gemcitabine/dt [Drug Therapy], Gogi R, Headache, hearing impairment, Histopathology, Hospitalization, Human, hypothyroidism, India, induction chemotherapy, Intensity Modulated Radiation Therapy, Kumar R, liver metastasis, lung metastasis, Major Clinical Study, Male, Mohanti BK, mucosa inflammation, multiple cycle treatment, nasopharynx carcinoma/dt [Drug Therapy], nasopharynx carcinoma/rt [Radiotherapy], nasopharynx carcinoma/su [Surgery], neck dissection, neck swelling, Neutropenia, nose obstruction, overall response rate, Overall Survival, paclitaxel/cb [Drug Combination], paclitaxel/dt [Drug Therapy], palliative chemotherapy, peripheral neuropathy, Pramanik R, primary tumor/rt [Radiotherapy], progression free survival, Radiotherapy Dosage, Retrospective Study, Salvage Therapy, Sharma A, Sikka K, Singh AC, Smoking, Spinal cord, survival prediction, teaching hospital, Thakar A, thrombocytopenia, Thulkar S, toxicity/si [Side Effect], treatment interruption, Treatment Outcome, trismus, Vomiting, xerostomia
Use of paclitaxel to successfully treat children, adolescents, and young adults with Kaposi sarcoma in southwestern Tanzania
Tags: 2021, 2023 SE5 - Low Resource Setting, Adinani H, Adolescent, Adult, antiretroviral therapy, antiretrovirus agent/dt [Drug Therapy], Article, Bacha J, bleomycin/cb [Drug Combination], bleomycin/dt [Drug Therapy], bleomycin/iv [Intravenous Drug Administration], Campbell L, cancer combination chemotherapy, Cancer Palliative Therapy, Cancer Recurrence, Cancer Survival, Child, Children, Cohort Analysis, dexamethasone/dt [Drug Therapy], doxorubicin/cb [Drug Combination], doxorubicin/dt [Drug Therapy], drug contraindication, El-Mallawany NK, Female, Follow Up, Human, Human immunodeficiency virus infection/dt [Drug Therapy], Kaposi sarcoma/dt [Drug Therapy], lack of drug effect, long term survival, Major Clinical Study, Male, Mehta P, multiple cycle treatment, Paclitaxel, paclitaxel/dt [Drug Therapy], Quality Of Life, Retrospective Study, Slone J, Tanzania, treatment duration, Treatment Outcome, Treatment Planning, trend study, vincristine/cb [Drug Combination], vincristine/dt [Drug Therapy], vincristine/iv [Intravenous Drug Administration], virus load, Young Adult
The care for oncologic patients undergoing pediatric palliative care and the griefs of a health team
Tags: 2023, 2023 SE3 - Oncology, Alves RSF, anxiety, Article, Cancer Diagnosis, Chronic Disease, Clinical Article, coronavirus disease 2019, Cross-sectional Study, de Sena JGM, de Vasconcelos AV, Female, Follow Up, Health Service, Human, Male, Melo CF, Palliative Care, Palliative Therapy, Pandemic, Psicooncologia, Psychology, Questionnaire, Ruiz EM, Semi Structured Interview, Teixeira LC
Evaluation Of Temporal Health System Factors Influencing Parallel Palliative Care Referral For Children With Complex Cardiorespiratory Diagnosis And Treatment
Tags: 2023, Adolescent, Aidoo E, apparent life threatening event, Archives of Disease in Childhood, Artificial Ventilation, Awareness, Chan-Dominy A, Child, Clinical Article, Clinical Nurse Specialist, community care, conference abstract, Consultation, Controlled Study, Decision Making, Demographics, Diagnosis, E-mail, Education, Female, Follow Up, Freitas D, heart graft, Hospice, hospital discharge, Human, Infant, Length Of Stay, Life Sustaining Treatment, Male, Nkulu G, Nurse, Nursing Staff, October List 2031, organizational restructuring, outcome assessment, Oxygenation, Palliative Care, Palliative Therapy, Patient Referral, Pediatric Intensive Care Unit, Practice Guideline, Quality Of Life, Retrospective Study, Subhash S, Surgery, Trust, writing
Population-Level Analysis of Appropriateness of End-of-Life Care for Children with Neurologic Conditions
Tags: 2023, Analysis of Variance, Article, Beernaert K, Belgium, Child, Cohen J, Cohort Analysis, Comfort, Deliens L, Drawing, Female, financial management, Follow Up, General Practitioner, Human, Intensive Care Unit, Major Clinical Study, Male, May List 2023, nationality, Palliative Therapy, Phlebotomy, Physician, Piette V, Retrospective Study, Sibling, Smets T, Surgery, Terminal Care, The Journal Of Pediatrics, Total Quality Management, van Berlaer G
End of life in patients attended by pediatric palliative care teams: what factors influence the place of death and compliance with family preferences?
Tags: 2023, Article, Child, Child Death, Childhood Mortality, death toll, Decision Making, Escobosa-Sanchez O, European Journal of Pediatrics, Female, Follow Up, Home Visit, Hospital Mortality, Human, living will, Madrid-Rodriguez A, Major Clinical Study, Martino-Alba R, May List 2023, Morales-Asencio JM, Multicenter Study, Navarro-Mingorance Á, neuromuscular function, Palliative Care, Palliative Therapy, Peláez-Cantero MJ, Place Of Death, Probability, Quality Of Life, Right to Die, Tavera-Tolmo A, Terminal Care
Social Workers in Pediatric Intensive Care Units: A Physician Perspective
Tags: 2022, abuse, Adolescent, April List 2023, Article, Aslan K, Atakul G, Caglar A, Child, child custody, child neglect, Child Psychiatry, community mental health center, Consultation, Counseling, Demircan TO, Female, Follow Up, hospital information system, Hospitalization, Human, Infant, Intensive Care Units, Male, Ozhan P, Palliative Therapy, Pediatric Intensive Care Unit, Physician, Retrospective Study, social problem, Social Work, Social Worker, Turkey (republic), Turkish Journal of Pediatric Disease
Massage therapy for symptom reduction and improved quality of life in children with cancer in palliative care: A pilot study
Tags: 2020, Adolescent, Article, Carcinoma, Child, Clinical Article, Complementary Therapies in Medicine, Controlled Study, Expectation, Female, Follow Up, Genik L M, Human, Leukemia, Lymphoma, Male, Marshall S, Massage, McMurtry C M, Oncology 2020 List, Pain, Pain Measurement, Palliative Therapy, patient worry, Pilot Study, Quality Of Life, Quantitative Study, Rapoport A, Sarcoma, Stinson J
The Use of Concurrent Home Hospice for Pediatric Heart Failure Patients Awaiting Heart Transplant on Milrinone and/or Ventricular Assist Device
Tags: 2020, 78415-72-2 (milrinone), Adams V L, Body Weight, Burnette A L, Child, Clergy, conference abstract, Controlled Study, dietitian, Emergency Ward, Feeding, Follow Up, Heart Failure, heart graft, Henderson H T, Home Visit, Hospice, Hospital Admission, hospital discharge, hospital readmission, Human, inotropism, Journal of Heart and Lung Transplantation, May 2020 List, milrinone, money, Mortality, Outpatient, Palliative Therapy, Satisfaction, Savage A J, Social Worker, travel
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
Feasibility and Acceptability of Recruiting Very Young Hospitalized Children Receiving Palliative Care to an Integrative Therapy Study (S743)
Tags: 2020, Adolescent, Allmendinger-Goertz K, Child, conference abstract, Controlled Study, Critically Ill Patient, Feasibility Study, Female, Follow Up, Foster Care, Friebert S, Hospitalized Child, Human, Ibach M, Infant, Journal of Pain and Symptom Management, Major Clinical Study, Male, March 2020 List, Palliative Therapy, Pilot Study, Reiki, Shaner V, Thrane S
Pediatric palliative podcasting as a tool to reach families
Pediatric Palliative Telehealth Care from Hospital to Hospital: A Pilot Project (QI653)
Tags: 2020, Child, Clinical Article, Comfort, community hospital, conference abstract, Consensus, Education, Evan E, Feasibility Study, Female, Follow Up, Human, Human Experiment, Journal of Pain and Symptom Management, Likert scale, Male, March 2020 List, Mock K O, Palliative Therapy, Primary Health Care, program feasibility, Questionnaire, Sandesara A, Satisfaction, Telehealth, tertiary care center, Total Quality Management
Vulnerable Populations Receiving Palliative Radiation in a Children's Hospital: Reporting on the Underreported
Tags: 2019, Adult, Anesthesia, Asia, cancer radiotherapy, Central Nervous System Tumor, Child, conference abstract, Controlled Study, Death, electronic medical record, employer, Female, Follow Up, fraud, housing, Human, Hwang L, immigration, International Journal Of Radiation Oncology Biology Physics, Lee H J, Liu K X, lowest income group, Major Clinical Study, Male, Medical Record Review, Mental Stress, Neuroblastoma, Olch A J, Oncology 2019 List, Organization, Pain, Poverty, race, radiation oncologist, Radiotherapy, Retrospective Study, Rhabdomyosarcoma, School Child, South and Central America, Terminal Care, vulnerable population, Wong K, Young Adult
Clinical practice and outcomes of palliative radiation therapy in pediatric oncology patients: An international comparison of experiences from two distinct countries and health care systems
Tags: 2019, Alcorn S R, Anorexia, Article, bradycardia, Brain Metastasis, Cancer Palliative Therapy, cancer radiotherapy, Cancer Survival, Chen M J, Chen Q, Child, Childhood Cancer/rt [radiotherapy], Clinical Outcome, Clinical Practice, Cohort Analysis, Figueiredo M L S, Follow Up, Human, Ladra M, leukemia/rt [Radiotherapy], lymphoma/rt [Radiotherapy], Major Clinical Study, mucosa inflammation, neuroblastoma/rt [Radiotherapy], Oncology 2019 List, Opiate/dt [drug Therapy], opiate/pv [Special Situation for Pharmacovigilance], osteosarcoma/rt [Radiotherapy], Pain/dt [drug Therapy], Palliative radiation therapy, Palliative Therapy, pediatric patient, Pediatric radiation therapy, Preschool Child, Priority Journal, radiation dermatitis, Radiation Dose Fractionation, radiation induced neoplasm, Radiotherapy and Oncology, Rao A D, rectum hemorrhage, Sehgal S, Terezakis S A, Treatment Outcome, treatment response, tumor growth, Villar R, Yegya-Raman N
The Nesting Dolls Design: A Methodology for the Recruitment of Bereaved Parents for Partnership Activities Related to Palliative Care and Bereavement Support in Paediatric Psycho-Oncology
Tags: 2018, 52315-07-8 (cypermethrin), 65731-84-2 (cypermethrin), 66841-24-5 (cypermethrin), 67375-30-8 (cypermethrin), Bereavement Support, Bourque C J, Cardinal G, Child, Clinical Article, Clinician, conference abstract, Confidentiality, Content Analysis, Controlled Study, cypermethrin, Death, Dumont E, evaluation research, Female, filter, Follow Up, Human, information center, Intensive Care, Interview, Journal of Pain and Symptom Management, Male, Neonatology, nesting, Oncology 2019 List, Palliative Therapy, Pediatrics, Psycho-Oncology, Questionnaire, research ethics, Sultan S, writing
Comparison of treatment modalities in syndromic children with Obstructive Sleep Apnea-A randomized cohort study
Tags: 2014, adenotonsillectomy, apnea hypopnea index, Article, Arumugam S V, breathing difficulties, Child, Clinical Effectiveness, Continuous Positive Airway Pressure, Controlled Study, CPAP device, Down Syndrome, Epworth sleepiness scale, ess-c, Female, Follow Up, Human, International Journal of Pediatric Otorhinolaryngology, Kameswaran M, Major Clinical Study, Male, MPSI, MPSII, MPSIII, MPSIIIA, MPSIIIB, MPSVI, MPSVII, Mucopolysaccharidoses, Mucopolysaccharidosis, Murali S, osa-18, outcome assessment, Paramasivan V K, Pediatric obstructive sleep apnea, physical interventions, positive end expiratory pressure, Priority Journal, Quality Of Life, radiofrequency ablation device, Randomized Controlled Trial, sleep disordered breathing/su [Surgery], sleep disordered breathing/th [Therapy], Sudarsan S S, surgical interventions, Treatment Outcome
Subthalamic Nuclei Stimulation in Patients With Pantothenate Kinase-Associated Neurodegeneration (PKAN)
Tags: 2017, Adolescent, Adult, Article, Brain Depth Stimulation, Burke Fahn Marsden Dystonia Rating Scale movement rating scale, Case Report, deep brain stimulation, Dou W, Dystonia, Female, fluency disorder, Follow Up, globus pallidus internus, Guo J, Guo Y, Human, IND, Liu Y, Liu Z, Ma W, Male, Middle Aged, neurodegeneration with brain iron accumulation/th [Therapy], neurologic disease assessment, Neurologic Examination, Neuromodulation, pantothenate kinase-associated neurodegeneration, scoring system, subthalamic nuclei, subthalamic nuclei stimulation, Subthalamic Nucleus, surgical intervention, tone and motor problems, Treatment Outcome, Wan X, Wang L, Wang R, Wang Y, Yang Y
Effect of selective dorsal rhizotomy on daily care and comfort in non-walking children and adolescents with severe spasticity
Tags: 2017, Adolescent, Attention, Becher J G, Bolster E A M, Buizer A I, Cerebral Palsy, Child, Clinical Article, Comfort, Congenital Malformation, Controlled Study, dorsal rhizotomy, Dystonia, European Journal of Paediatric Neurology, Follow Up, Human, leg muscle, lipidoses, Medical History, Pain, risk factor, Satisfaction, School Child, scoliosis, selective dorsal rhizotomy, Spasticity, Stadhouder A, Strijers R L, surgical intervention, tone and motor problems, van de Pol L A, van Ouwerkerk W J, van Schie P E M, Vermeulen R J
Deep Brain Stimulation in Rare Inherited Dystonias
Tags: 2016, Adolescent, Adult, Aged, Aquino C C, Article, ataxia telangiectasia, ataxia telangiectasia/di [Diagnosis], ataxia telangiectasia/dt [Drug Therapy], atypical dopa responsive dystonia/di [Diagnosis], atypical dopa responsive dystonia/dt [Drug Therapy], Baclofen/dt [drug Therapy], Beaulieu-Boire I, benzodiazepine derivative/dt [Drug Therapy], Brain Depth Stimulation, Brain Stimulation, Burke Fahn Marsden Dystonia Rating Scale, cerebellar ataxia/di [Diagnosis], cerebellar ataxia/dt [Drug Therapy], Child, chorea/di [Diagnosis], chorea/dt [Drug Therapy], Clinical Article, clinical assessment, Clinical Effectiveness, clobazam/dt [Drug Therapy], clonazepam/dt [Drug Therapy], deep brain stimulation, diazepam/dt [Drug Therapy], disease duration, Disease Severity, Dystonia, dystonia/di [Diagnosis], dystonia/dt [Drug Therapy], Dystonic Disorder/su [surgery], dystonic disorder/th [Therapy], entacapone/cb [Drug Combination], entacapone/dt [Drug Therapy], escitalopram/dt [Drug Therapy], extrapyramidal syndrome/di [Diagnosis], extrapyramidal syndrome/dt [Drug Therapy], Fallis M, Fasano A, Follow Up, gabapentin/dt [Drug Therapy], haloperidol/dt [Drug Therapy], Hodaie M, Human, Inherited dystonia, Kalia S K, Lang A E, levodopa/dt [Drug Therapy], lorazepam/dt [Drug Therapy], Lozano A, MCM deficiency, methylmalonic aciduria/di [Diagnosis], methylmalonic aciduria/dt [Drug Therapy], Middle Aged, mirtazapine/dt [Drug Therapy], Moro E, motor dysfunction assessment, NCL, Nemaline myopathy, nemaline myopathy/di [Diagnosis], nemaline myopathy/dt [Drug Therapy], neuronal ceroid lipofuscinosis/di [Diagnosis], neuronal ceroid lipofuscinosis/dt [Drug Therapy], olanzapine/dt [Drug Therapy], outcome assessment, Phenotype, Poon Y Y, pramipexole/cb [Drug Combination], pramipexole/dt [Drug Therapy], Preoperative Care, Priority Journal, Rating Scale, risperidone/dt [Drug Therapy], School Child, selegiline/cb [Drug Combination], selegiline/dt [Drug Therapy], Surgery, surgical intervention, tetrabenazine/dt [Drug Therapy], therapy effect, time to treatment, tizanidine/dt [Drug Therapy], tone and motor problems, trazodone/dt [Drug Therapy], Treatment, trihexyphenidyl/cb [Drug Combination], trihexyphenidyl/dt [Drug Therapy], Trisomy/di [diagnosis], trisomy/dt [Drug Therapy], Wilson disease/di [Diagnosis], Wilson disease/dt [Drug Therapy], woodhouse sakati syndrome/di [Diagnosis], woodhouse sakati syndrome/dt [Drug Therapy], x trisomy/di [Diagnosis], x trisomy/dt [Drug Therapy]
Efficacy and safety of endoscopic dilation of esophageal strictures in epidermolysis bullosa
Tags: 2004, Adolescent, Adult, Anderson S H C, Article, Balloon dilatation, barium, Body Weight, Chappiti U, contrast enhancement, Doig L, Dysphagia, Eady R A J, endoscopic balloon dilatation, endoscopic therapy, epidermolysis bullosa, epidermolysis bullosa/th [Therapy], esophagus dilatation, esophagus stricture/th [Therapy], feeding difficulties, Female, Follow Up, Gastrointestinal Endoscopy, Human, Major Clinical Study, Male, Meenan J, Morbidity, Nutritional Status, Prinja H, Priority Journal, Propofol, School Child, scoring system, surgical intervention, Thompson R P H, Treatment Outcome, Williams K N
Physicians' attitudes when faced with life-threatening events in children with severe neurological disabilities
Tags: 2019, Adult, Article, childhood disease/ep [Epidemiology], Clinical Decision Making, Cross-sectional Study, Developmental Neurorehabilitation, Disability, Emergency Ward, Female, Follow Up, Health Care Access, Human, Intensive Care, Likert scale, Major Clinical Study, Male, May 2019 List, neurologic disease/ep [Epidemiology], Newman C J, Noninvasive Ventilation, Palliative Therapy, Patient Care, Patient Comfort, Pediatric Rehabilitation, Personal Experience, Physician Attitude, Priority Journal, profound intellectual and multiple disability, rehabilitation center, Resuscitation, Risk, risk factor, Spinal Muscular Atrophy, Swiss, Terminal Care, Tracheostomy, Wosinski B