Finnish children who needed long-term home respiratory support had severe sleep-disordered breathing and complex medical backgrounds
Child; child; article; cohort analysis; controlled study; female; human; major clinical study; male; retrospective study; palliative therapy; treatment duration; anxiety; comorbidity; Sleep Disorders; tracheostomy; long term care; follow up; Only Child; home care; university hospital; clinical feature; clinical outcome; psychological aspect; central nervous system disease; disease severity; apnea hypopnea index; adolescent; polysomnography; adenotonsillectomy; Down syndrome; infant; onset age; brain tumor; demographics; multidisciplinary team; data analysis software; developmental delay; tonsillectomy; neuromuscular disease; pneumonia; respiratory distress syndrome; craniofacial surgery; asthma; acute respiratory failure; beta adrenergic receptor blocking agent/pv [Special Situation for Pharmacovigilance]; montelukast/pv [Special Situation for Pharmacovigilance]; developmental disorder; aspiration pneumonia/co [Complication]; childhood obesity; continuous positive airway pressure; Finn (citizen); invasive ventilation; noninvasive positive pressure ventilation; sleep apnea syndromes/th [Therapy]; adenoid hypertrophy; angiotensin receptor antagonist/pv [Special Situation for Pharmacovigilance]; 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]; brain hypoxia; cardiovascular agent/pv [Special Situation for Pharmacovigilance]; central sleep apnea syndrome/th [Therapy]; choana atresia/su [Surgery]; corticosteroid/ih [Inhalational Drug Administration]; corticosteroid/pv [Special Situation for Pharmacovigilance]; craniofacial malformation; cranioplasty; diaphragm hernia; dipeptidyl carboxypeptidase inhibitor/pv [Special Situation for Pharmacovigilance]; hypoventilation/th [Therapy]; ICD-10; laryngomalacia; Le Fort III osteotomy; lung hypoplasia; mask/am [Adverse Device Effect]; maxilla hypoplasia/co [Complication]; medical device complication/co [Complication]; nasal mask; nose obstruction/co [Complication]; obstructive sleep apnea/th [Therapy]; orthodontic procedure; respiratory care; skin irritation/co [Complication]; Sleep Apnea Syndromes; sleep disorder/co [Complication]; SPSS version 28.00; steroid/pv [Special Situation for Pharmacovigilance]; tonsillotomy
Aim: No studies have described long-term paediatric home respiratory support in Nordic countries. We examined the clinical characteristics and long-term outcomes of paediatric patients who received continuous positive airway pressure, non-invasive-positive-pressure ventilation and invasive ventilation from a multidisciplinary home respiratory support team. Methods: Retrospective tertiary-level data were collected between 1 January 2010 and 31 December 2020 in Tampere University Hospital. These comprised patient demographics, treatment course and polysomnography-confirmed sleep-disordered breathing (SDB). Results: There were 93 patients (63.4% boys). The median age at treatment initiation was 8.4 (range 0.11-16.9) years. The patients had: neuromuscular disease (16.1%), central nervous system disease (14.0%), developmental disabilities and congenital syndrome (29.0%), lung-airway conditions (11.8%), craniofacial syndrome (15.1%) and severe obesity (14.0%). More than two-thirds had severe SDB (66.7%) and the most common one was obstructive sleep apnoea in 66.7%. We found that 92.5% received long-term therapy for more than 3 months and the mean treatment duration was 3.3 ± 2.7 years. A non-invasive mask interface was used in 94.7% of cases and 5.3% needed tracheostomy ventilation. More than a quarter (26.7%) achieved disease resolution during the study period. Conclusion: Most children who needed long-term home respiratory support had complex conditions and severe, persistent SDB.
Jarvela M; Katila M; Eskola V; Makinen R; Mandelin P; Saarenpaa-Heikkila O; Lauhkonen E
Acta Paediatrica
2024
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/apa.16981" target="_blank" rel="noreferrer noopener">10.1111/apa.16981</a>
Use of paclitaxel to successfully treat children, adolescents, and young adults with Kaposi sarcoma in southwestern Tanzania
child; Adolescent; adult; article; cohort analysis; female; human; major clinical study; male; retrospective study; quality of life; treatment duration; young adult; follow up; cancer palliative therapy; cancer recurrence; cancer survival; adolescent; treatment outcome; trend study; virus load; multiple cycle treatment; cancer combination chemotherapy; doxorubicin/cb [Drug Combination]; doxorubicin/dt [Drug Therapy]; vincristine/cb [Drug Combination]; vincristine/dt [Drug Therapy]; treatment planning; long term survival; Tanzania; Kaposi sarcoma/dt [Drug Therapy]; paclitaxel/dt [Drug Therapy]; antiretroviral therapy; antiretrovirus agent/dt [Drug Therapy]; bleomycin/cb [Drug Combination]; bleomycin/dt [Drug Therapy]; bleomycin/iv [Intravenous Drug Administration]; dexamethasone/dt [Drug Therapy]; drug contraindication; Human immunodeficiency virus infection/dt [Drug Therapy]; lack of drug effect; vincristine/iv [Intravenous Drug Administration]; Paclitaxel
Treating Kaposi sarcoma (KS) in children, adolescents, and young adults (AYA) remains a challenge in low-and middle-income countries (LMIC) where chemotherapy options and availability are limited. We describe a retrospective cohort review of pediatric patients with KS treated with paclitaxel in Mbeya, Tanzania, between 1 March 2011 and 31 December 2019. Paclitaxel was given to patients who had KS relapse, a contraindication to bleomycin, vincristine, and doxorubicin (ABV), special circumstances in which a clinician determined that paclitaxel was preferable to ABV, or experienced treatment failure, defined as persistent KS symptoms at the completion of treatment. All patients also received multidisciplinary palliative care. Seventeen patients aged 5.1-21.3 years received paclitaxel, of whom 47.1% (8/17) had treatment failure, 29.4% (5/17) received paclitaxel as initial treatment, and 23.5% (4/17) had relapsed. All HIV positive patients (16/17) were given anti-retroviral therapy (ART) and 87.5% (14/16) achieved viral load <1000 cp/mL. At censure, 82.3% (14/17) of patients were alive-71.4% (10/14) achieved complete clinical remission and 28.6% (4/14) achieved a partial response. The median follow up was 37.3 months (range 8.0-83.5, IQR 19.7-41.6), and no patients were lost to follow up. In this cohort, high rates of long-term survival and favorable outcomes were possible with paclitaxel treatment.Copyright © 2021 by the authors. Licensee MDPI, Basel, Switzerland.
Adinani H; Campbell L; El-Mallawany NK; Slone J; Mehta P; Bacha J
Children
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3390/children8040275" target="_blank" rel="noreferrer noopener">10.3390/children8040275</a>
Palliative care in Swiss pediatric oncology settings: a retrospective analysis of medical records
adolescent; article; cancer mortality; cancer palliative therapy; central nervous system tumor/th [Therapy]; child; childhood cancer/th [Therapy]; clinical decision making; diagnosis related group; female; human; leukemia/th [Therapy]; major clinical study; male; medical record; priority journal; retrospective study; Switzerland; treatment duration
Purpose: This study examined the provision of palliative care and related decision-making in Swiss pediatric oncology settings. The aim was to determine if and when children who died from cancer received palliative care, whether there were differences by cancer diagnosis, and inclusion of children in decision-making regarding palliative care.
Rost M; Acheson E; Kuhne T; Ansari M; Pacurari N; Brazzola P; Niggli F; Elger B S; Wangmo T
Supportive Care in Cancer
2707
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1007/s00520-018-4100-x" target="_blank" rel="noreferrer noopener">10.1007/s00520-018-4100-x</a>
Gabapentin for the treatment of pain manifestations in children with severe neurological impairment: A single-centre retrospective review
child; human; retrospective study; clinical article; palliative care; pain; priority journal; review; alopecia/si [Side Effect]; disease severity; drug efficacy; drug substitution; drug withdrawal; gabapentin/ae [Adverse Drug Reaction]; gabapentin/dt [Drug Therapy]; gabapentin/pv [Special Situation for Pharmacovigilance]; gastroenterology; general paediatrics; hypertransaminasemia/si [Side Effect]; irritability; lethargy/si [Side Effect]; muscle twitch; neurodisability; neurologic disease; pain/dt [Drug Therapy]; pregabalin/dt [Drug Therapy]; pregabalin/pv [Special Situation for Pharmacovigilance]; treatment duration; treatment response; vomiting/dt [Drug Therapy]; vomiting/si [Side Effect]
Pain, irritability and feeding intolerance are common symptoms affecting quality of life in children with severe neurological impairment (SNI). We performed a retrospective study to explore the use of gabapentinoid medications for symptom control in children with SNI. Patients attending the palliative care or gastroenterology department being treated with gabapentin for irritability, vomiting or pain of unknown origin were included. Information was gathered retrospectively from medical documentation. Irritability was reduced in 30 of the 42 patients included. Gabapentin was discontinued in 15 children, 12 of whom then received pregabalin. Three children had a good response to pregabalin, six a minimal improvement and three no improvement. These results support the use of gabapentinoids in this patient cohort. Copyright © Author(s) (or their employer(s)) 2019.
Collins A; Mannion R; Broderick A; Hussey S; Devins M; Bourke B
BMJ Paediatrics Open
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/bmjpo-2019-000467" target="_blank" rel="noreferrer noopener">10.1136/bmjpo-2019-000467</a>
End-of-life care in children with hematologic malignancies
home care; adolescent; blood transfusion; retrospective study; 52-26-6 (morphine); 57-27-2 (morphine); prescription; cohort analysis; fatigue; morphine/dt [Drug Therapy]; patient referral; treatment duration; human; article; child; female; male; controlled study; adult; terminal care; clinical article; child care; palliative therapy; intensive care unit; walking difficulty; hematologic malignancy/dt [Drug Therapy]; hematologic malignancy/th [Therapy]; hematologic malignancy/dt [Drug Therapy]; hospital mortality; mucosa inflammation; pallor; petechia; somnolence
Introduction: Hematologic malignancies (HM) represent the most common neoplasms in childhood. Despite improved overall survival rates, they are still a major contributor to cancer death in children. Aims: To determine the proportion of children with HM in pediatric palliative care (PPC) and to identify the clinical characteristics and symptoms in comparison to children with extracranial solid tumors (non HM patients). Patients and Methods: This study was conducted as a single-center retrospective cohort study of patients in the care of a large specialized PPC team. Results: Fifteen HM and 50 non HM patients were included. Symptoms in which HM patients scored significantly higher than non HM patients were mucositis, difficulty moving, somnolence, fatigue, petechiae and paleness. Blood transfusions were more frequently administered to HM patients, but large external hemorrhage was not observed in any child. A large variety of drugs and appliances were needed by the patients, with morphine being the most frequently prescribed drug. During the study period, a much larger and over the years even increasing number of HM patients (not in the care of the PPC team) died in hospital with an (assumed) curative intent, with two thirds dying in the ICU. Conclusions: Children with HM were referred to outpatient PPC with almost the full clinical picture of advanced leukemia. Noteworthy, the number of children with HM dying at home is decreasing in our center, instead a substantial proportion received high-intensity medical hospital care including novel anticancer therapies. These patients thus seem to be at an increased risk of dying in hospital as the right time to transfer them to palliative care is oftentimes missed.
Hoell JI; Warfsmann J; Balzer S; Borkhardt A; Janssen G; Kuhlen M
Oncotarget
2017
<a href="http://doi.org/%2010.18632/oncotarget.21188" target="_blank" rel="noreferrer noopener">10.18632/oncotarget.21188</a>
Neonatal end-of-life care: A single-center NICU experience in Israel over a decade
newborn care; newborn mortality; adrenal insufficiency/ep [Epidemiology]; anemia/ep [Epidemiology]; Article; brain edema/ep [Epidemiology]; brain hemorrhage/ep [Epidemiology]; cause of death; child parent relation; congenital malformation/ep [Epidemiology]; gestational age; Human; Incidence; Israel; Jerusalem; kidney failure/ep [Epidemiology]; Medical Decision Making; Middle East; necrotizing enterocolitis/ep [Epidemiology]; Newborn; newborn death; newborn hypoxia/ep [Epidemiology]; Newborn Intensive Care; newborn sepsis/ep [Epidemiology]; practice guideline; prematurity; priority journal; quality of life; Religion; respiratory failure/ep [Epidemiology]; sepsis/ep [Epidemiology]; shock/ep [Epidemiology]; treatment duration
OBJECTIVES: To follow changes in the causes of neonatal deaths in the NICU at Hadassah Medical Center, Jerusalem, Israel, over a decade; to examine trends regarding types of end-of-life-care provided (primary nonintervention, maximal intensive, and redirection of intensive care, including limitation of care and withdrawal of life-sustaining treatment); and to assess the parental role in the decision-making process given that the majority of the population is religious. METHODS: All neonates who died between 2000 and 2009 were identified. The causes and circumstances of death were Abstract: ed from the medical records. Trends in end-of-life decisions were compared between 2 time periods: 2000-2004 versus 2005-2009. RESULTS: Overall, 239 neonates died. The leading cause of death in both study periods was prematurity and its complications (76%). Among term infants, the leading cause of death was congenital anomalies (48%). Fifty-six percent of the infants received maximal intensive care; 28% had redirection of intensive care, of whom 10% had withdrawal of life-sustaining treatment; and 16% had primary nonintervention care. Over the years, maximal intensive care decreased from 65% to 46% (P < .02), whereas redirection of care increased from 19.2% to 37.5% (P < .0005). An active parental role in the end-of-life decision process increased from 38% to 84%. CONCLUSIONS: Even among religious families of extremely sick neonates, redirection of care is a feasible treatment option, suggesting that apart from survival, quality-of-life considerations emerge as an important factor in the decision-making process for the infant, parents, and caregivers.
2013-06
Eventov-Friedman S; Kanevsky H; Bar-Oz B
Pediatrics
2013
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1542/peds.2012-0981" target="_blank" rel="noreferrer">10.1542/peds.2012-0981</a>