Palliative care for children with central nervous system tumors: results of a Spanish multicenter study
Central Nervous System; child; Palliative Care; childhood cancer; article; controlled study; female; human; major clinical study; male; retrospective study; preschool child; palliative therapy; medulloblastoma; cancer patient; school child; multicenter study; surgery; communication disorder; motor dysfunction; opiate; sedation; central nervous system tumor; place of death; hospital mortality; dexamethasone; antiemetic agent; pontine glioma; asthenia; Central Nervous System Neoplasms
Background: Brain tumors represent the most common cause of cancer-related death in children. Few studies concerning the palliative phase in children with brain tumors are available. Objective(s): (i) To describe the palliative phase in children with brain tumors; (ii) to determine whether the use of palliative sedation (PS) depends on the place of death, the age of the patient, or if they received specific palliative care (PC). Method(s): Retrospective multicenter study between 2010 and 2021, including children from one month to 18 years, who had died of a brain tumor. Result(s): 228 patients (59.2% male) from 10 Spanish institutions were included. Median age at diagnosis was 5 years (IQR 2-9) and median age at death was 7 years (IQR 4-11). The most frequent tumors were medulloblastoma (25.4%) and diffuse intrinsic pontine glioma (DIPG) (24.1%). Median number of antineoplastic regimens were 2 (range 0-5 regimens). During palliative phase, 52.2% of the patients were attended by PC teams, while 47.8% were cared exclusively by pediatric oncology teams. Most common concerns included motor deficit (93.4%) and asthenia (87.5%) and communication disorders (89.8%). Most frequently prescribed supportive drugs were antiemetics (83.6%), opioids (81.6%), and dexamethasone (78.5%). PS was administered to 48.7% patients. Most of them died in the hospital (85.6%), while patients who died at home required PS less frequently (14.4%) (p =.01). Conclusion(s): Children dying from CNS tumors have specific needs during palliative phase. The optimal indication of PS depended on the center experience although, in our series, it was also influenced by the place of death.Copyright © 2023, The Author(s), under exclusive licence to Federacion de Sociedades Espanolas de Oncologia (FESEO).
Perez-Torres LM; Navarro-Marchena L; de Noriega I; Morey OM; Solano-Paez P; Rubio PE; Garrido CC; Garcia AM; Tallon GM; Huidobro LB; Portugal RR; Lopez IB; Lassaletta A; Morgenstern IA; Cruz MO; Valero AL; Llort SA; Gros SL; Marquez VC; Moreno L; Quiroga-Cantero E
Clinical and Translational Oncology
2023
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/s12094-023-03301-7" target="_blank" rel="noreferrer noopener">10.1007/s12094-023-03301-7</a>
Palliative Home-Based Care to Pediatric Cancer Patients: Characteristics and Healthcare Delivered
Oncology
OBJECTIVES: Cancer patients constitute an important group in pediatric palliative care. Though the patients' home is the preferred place of care, little is known about the characteristics of patients attended by units that provide home assistance. Our objective is to describe the characteristics of cancer patients and healthcare delivered by a pediatric palliative care unit with a home hospitalization program. METHODS: Retrospective study based on clinical records of deceased patients attended by the pediatric palliative care unit of Madrid over 10 years. Data collected included general characteristics, type of cancer, whether they received home assistance, place of death, healthcare delivered (hospitalizations, devices, oncological treatments…), and symptom prevalence. RESULTS: After excluding 47 patients, the clinical records of 144 patients were analyzed. The median age at referral was 9.4 years (IQR: 5.6-14.1), 61.2% were males; 44.2% had solid non-CNS tumors, 35.4% CNS tumors, and 20.4% hematological malignancies; 137 received home care with 89 not requiring further hospital admissions and 70.1% dying at home. The median follow-up time was 1.6 months (IQR: 0.5-2.9). The most used devices were venous ports (71.4%) and oxygen (49.4%); 53.5% of the patients received oncological support therapies. The most common symptoms were pain (91.8%) dyspnea (49.0%) and fatigue (46.9%). CONCLUSIONS: Home assistance was provided in a high number of patients, with a large proportion needing one or no hospital admissions and 70.1% of them dying at home. Further studies characterizing these patients and the factors which promote early access to palliative care are needed.
de Noriega Í; García-Salido A; Martino R; Herrero B
Supportive Care in Cancer
2022
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/s00520-021-06412-5" target="_blank" rel="noreferrer noopener">10.1007/s00520-021-06412-5</a>
Descriptive analysis of palliative sedation in a pediatric palliative care unit
Pediatric palliative care; Palliative; Descriptive analysis; Sedation
INTRODUCTION: Data surrounding palliative sedation in pediatric patients is scarce. Our objective is to assess the utility of creating a quality standard for pediatric palliative sedation. MATERIAL AND METHODS: A non-systematic review of the literature was used to find recommendations for pediatric palliative sedation, after which a definition was established based on three items: (1) indication, (2) consent, and (3) application. Afterwards, a retrospective analysis of palliative sedations applied by our unit over 5 years was performed. RESULTS: Out of 163 patients, palliative sedation was applied in 20, in 17 of them by our unit (14/20 males; median: 11.9 years). Twelve patients had oncological diseases, seven had neurological conditions, and one had a polymalformative syndrome. Nine patients had more than one symptom at the time of PS initiation with pain (11/17) and dyspnoea (10/17) being the most frequent. As for the definition, only three patients achieved a global completion, with the registration of the consent, specification of refractoriness and the establishment of an adequate initial sedative dose being the areas with more possible improvement. CONCLUSIONS: The application of the definition allowed us to analyze and find areas of improvement for our clinical practice of palliative sedation in pediatric patients.
de Noriega I; Rigal Andres M; Martino Alba R
Anales de pediatria
2022
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/10.1016/j.anpede.2022.04.004" target="_blank" rel="noreferrer noopener">10.1016/j.anpede.2022.04.004</a>
Hospital admissions into paediatric palliative care: A retrospective study
child; human; female; male; palliative therapy; major clinical study; Palliative care; article; death; hospitalization; retrospective study; patient care; pediatric hospital; hospice care; hospital admission; gastrostomy; Hospice care; Hospitalisation; Paediatric hospitals; respiratory system
Introduction: Patients may be admitted to hospital by paediatric palliative care units (PPCU) for different reasons, due to their different needs and clinical problems. The objective of this study is to present the data of patients admitted to the PPCU of the Autonomous Community of Madrid. Method(s): Descriptive retrospective study was conducted by reviewing the clinical records of the PPCU between January 2011 and December 2016. Result(s): Of 499 patients attended in this period, 166 (33%) were admitted to hospital at some point, generating a total of 314 episodes. Respiratory problems (34%) were the main cause of admission. Gastrostomy intervention (23 patients) was the commonest reason for a surgical admission. In this period, 46 patients died during hospitalisation. The highest frequencies of death, according to the admission cause, were respiratory problems (18 out 46) and end-of-life care (11 out 46). More than half (59%) of admissions lasted less than 7 days and 88% were 15 days or less. Conclusion(s): The causes and characteristics of the hospital admissions at a PPCU are heterogeneous, with respiratory problems being the most common cause of admission. The duration of the hospitalisation appears to be similar to that described for acute palliative care units. The creation of a specific PPCU that can refer their patients for hospital admission might help to improve continuity of care.
de Noriega I; Barcelo M; Perez M A; Puertas V; Garcia-Salido A; Martino R
Anales de Pediatria.
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/10.1016/j.anpedi.2019.02.001" target="_blank" rel="noreferrer noopener">10.1016/j.anpedi.2019.02.001</a>