Palliative care and paediatric cardiology: current evidence and future directions
Humans; Child; Palliative Care/td [Trends]; Cardiology/td [Trends]; Pediatrics/td [Trends]
Although outcomes for children with heart disease have improved substantially over the past several decades, heart disease remains one of the leading causes of paediatric mortality. For children who progress to advanced heart disease, disease morbidity is high, with many children requiring multiple surgical interventions and long-term intensive care hospitalisations. Care for children with advanced heart disease requires a multidisciplinary approach, and opportunities for earlier integration of palliative care are being explored. This Viewpoint summarises the relevant literature over the past decade. We also identify gaps in parent and provider understanding of prognosis and communication, propose indications for palliative care consultation in paediatric advanced heart disease, and summarise attitudes and perceived barriers to palliative care consultation. Areas for additional research that we identify include paediatric cardiologist education, parental distress, socioeconomic disparities, and patient-reported outcomes. Interdisciplinary clinical and research efforts are required to further advance the field and improve integration of palliative care in the care of children with heart disease. Copyright © 2019 Elsevier Ltd. All rights reserved.
Morell E; Moynihan K; Wolfe J; Blume E D
The Lancet Child & adolescent health
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/S2352-4642(19)30121-X" target="_blank" rel="noreferrer noopener">10.1016/S2352-4642(19)30121-X</a>
Easing of suffering in children with cancer at the end of life: is care changing?.
Child; Humans; Cohort Studies; Resuscitation Orders; Psychological; Stress; DNAR; Oncology at EOL; Neoplasms/th [Therapy]; Palliative Care/mt [Methods]; Palliative Care/td [Trends]
PURPOSE: In the past decade studies have documented substantial suffering among children dying of cancer, prompting national attention on the quality of end-of-life care and the development of a palliative care service in our institutions. We sought to determine whether national and local efforts have led to changes in patterns of care, advanced care planning, and symptom control among children with cancer at the end of life., METHODS: Retrospective cohort study from a US tertiary level pediatric institution. Parent survey and chart review data from 119 children who died between 1997 and 2004 (follow-up cohort) were compared with 102 children who died between 1990 and 1997 (baseline cohort)., RESULTS: In the follow-up cohort, hospice discussions occurred more often (76% v 54%; adjusted risk difference [RD], 22%; P < .001) and earlier (adjusted geometric mean 52 days v 28 days before death; P = .002) compared with the baseline cohort. Do-not-resuscitate orders were also documented earlier (18 v 12 days; P = .031). Deaths in the intensive care unit or other hospitals decreased significantly (RD, 16%; P = .024). Parents reported less child suffering from pain (RD, 19%; P = .018) and dyspnea (RD, 21%; P = .020). A larger proportion of parents felt more prepared during the child's last month of life (RD, 29%; P < .001) and at the time of death (RD, 24%; P = .002)., CONCLUSION: Children dying of cancer are currently receiving care that is more consistent with optimal palliative care and according to parents, are experiencing less suffering. With ongoing growth of the field of hospice and palliative medicine, further advancements are likely.
2008
Wolfe J; Hammel JF; Edwards KE; Duncan J; Comeau M; Breyer J; Aldridge SA; Grier HE; Berde C; Dussel V; Weeks JC
Journal Of Clinical Oncology
2008
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).
Journal Article
<a href="http://doi.org/10.1200/jco.2007.14.0277" target="_blank" rel="noreferrer">10.1200/jco.2007.14.0277</a>
Palliative care in Poland -- the Warsaw hospice for children
Child; Patient Discharge; Patient Admission; Poland; Editorial Board Reviewed; Expert Peer Reviewed; Hospice palliative care; Nursing Journals; Online/Print; Palliative Care/ei [Ethical Issues]; Palliative Care/td [Trends]; Pediatric Care; Pediatric Care/td [Trends]; Peer Reviewed Journals; UK & Ireland Journals.
Stefan Friedrichsdorf, Sandra Brun, Boris Zernikow and Tomasz Dangel report on epidemiological data and describe Warsaw's paediatric hospice home care programme.
2006
Friedrichsdorf SJ; Brun S; Zernikow B; Dangel T
European Journal Of Palliative Care
2006
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).
Journal Article
Pain therapy, pediatric palliative care and end-of-life care: training, experience, and reactions of pediatric residents in Italy
Internship and Residency; Pain/dt [Drug Therapy]; Palliative Care; Pediatrics/ed [Education]; Terminal Care; Adult; Child; Female; Humans; Italy; Male; Middle Aged; Needs Assessment; Palliative Care/st [Standards]; Palliative Care/td [Trends]; Surveys and Questionnaires; Terminal Care/st [Standards]; Terminal Care/td [Trends]
UNLABELLED: Pediatric palliative care represents the ideal response to life-limiting and life-threatening diseases and requires a specific and multidisciplinary training. This study aims at evaluating in Italy the training programs offered in pain therapy and pediatric palliative care, the exposure, and the personal experience concerning end-of-life care management. The data have been obtained through a survey addressed to all the residents specializing in pediatrics in Italy. Three hundred forty-eight of 1,200 residents from 33 of the 41 schools of pediatrics existing in Italy responded to the questionnaire. One hundred seventy-four of them (50 %) declared they received training in end-of-life care at least once: 146 during their graduation course of medicine, 84 during the pediatric residency, and 54 in both occasions. Sixty percent of respondents were present at one death at least, with an increasing percentage in the last years of residency (91.5 % in the fifth year) but only 12 % were directly involved in the management (36.2 % in the fifth year); 5.7 % managed at least one communication of death; 12.6 % followed sedo-analgesia protocols. Only 11 % of residents felt ready to face end-of-life care management. CONCLUSION: The training in end-of-life care in Italy is not currently satisfactory. Further efforts are therefore required to create a comprehensive and multidisciplinary training.
Rusalen F; Ferrante A; Po C; Salata M; Agosto C; Benini F
European Journal Of Pediatrics
2014
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/s00431-014-2304-8" target="_blank" rel="noreferrer">10.1007/s00431-014-2304-8</a>
Palliative epilepsy surgery in Dravet syndrome-case series and review of the literature
Corpus Callosum/su [surgery]; Epilepsies Myoclonic/di [diagnosis]; Epilepsies Myoclonic/su [surgery]; Palliative Care/td [trends]; Vagus Nerve Stimulation; Electroencephalography/td [trends]; Epilepsies Myoclonic/pp [physiopathology]; Epilepsy/di [diagnosis]; Epilepsy/pp [physiopathology]; Epilepsy/su [surgery]; Female; Humans; Infant; Male; Vagus Nerve Stimulation/td [trends]
PURPOSE: Dravet syndrome (DS), also known as severe myoclonic epilepsy of infancy (SMEI), is a rare genetic disorder that results in severe childhood-onset epilepsy. Children with DS initially present with seizures in the first year of life that are often associated with fevers. With age, multiple seizure types develop. There are few reports and no guidelines regarding palliative surgical treatment for DS. Therefore, we reviewed our surgical experience with DS. METHODS: We conducted a retrospective review of all patients with genetically confirmed DS who underwent either vagal nerve stimulator (VNS) implantation or corpus callosotomy (CC) from May 2001 to April 2014 at our institution. All inpatient and outpatient relevant documentation were reviewed. Demographic information, genetic mutation, operation performed, and preoperative and postoperative seizure frequency were recorded. Inclusion criteria required greater than one-year postoperative follow-up. RESULTS: Seven children with DS were assessed. Six patients were treated with VNS and one patient was treated with CC. In one child, VNS was followed by CC as a secondary procedure. Therefore, in total, eight surgeries were performed on seven patients during the study period. At least 1 year elapsed from presentation to our hospital and surgery for all patients. Average time after the first seizure to VNS was 4.1 years, and the average time after the first seizure to CC was 7.6 years. The mean age of patients undergoing VNS implantation was 4.3 years, and the mean age for patients undergoing CC was eight. Average follow-up for all seven patients was 6.6 years. Seizures were decreased in five of the six patients with VNS and decreased in the two patients after CC. Four of the six patients who had VNS implanted had a greater than 50 % reduction in seizure frequency, and one of the six patients who had VNS implanted had a less than 50 % reduction in seizure frequency. One patient did not respond effectively to the VNS and had very limited change in seizure frequency. Both patients who had a CC had a greater than 50 % reduction in seizure frequency. CONCLUSIONS: Both VNS and CC in patients with DS can be effective at reducing seizure frequency. Patients with DS may benefit from earlier and more aggressive surgical intervention. Studies using larger patient cohorts will help clarify the role that surgery may play in the multidisciplinary approach to controlling seizures in DS. Further studies will help determine the appropriate timing of and type of surgical intervention.
Dlouhy BJ; Miller B; Jeong A; Bertrand ME; Limbrick DD Jr; Smyth MD
Childs Nervous System
2016
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="https://doi.org/10.1007/s00381-016-3201-4">10.1007/s00381-016-3201-4</a>
Palliative Medicines For Children - A New Frontier In Paediatric Research
Biomedical Research/mt [methods]; Palliative Care/mt [methods]; Palliative Medicine/mt [methods]; Pediatrics/mt [methods]; Pharmaceutical Preparations/ad [administration & Dosage]; 0 (pharmaceutical Preparations); Biomedical Research/td [trends]; Child; Drug Delivery Systems/mt [methods]; Humans; Palliative Care/td [trends]; Palliative Medicine/td [trends]; Pediatrics/td [trends]
OBJECTIVES: This paper seeks to highlight from a UK perspective the current lack of a research evidence base in paediatric palliative care that has resulted in a paucity of available medicines with appropriate formulations (strength and dosage form) to provide symptom management for children with life-limiting illnesses and to raise awareness of this group of 'therapeutic orphans'. Currently, clinicians have limited, often unsuitable medication choices for their paediatric palliative care patients, with little hope of moving away from the status quo. KEY FINDINGS: Most medicines used in children receiving palliative care are old and off-patent drugs, developed for and tested in an adult population. Many are not available in suitable formulations (dosage form and strength) for administration to children, and there are often no age-related profiles of adverse drug reactions or for safe dosing. SUMMARY: Existing regional paediatric palliative care networks and support organisations should lobby funding bodies and the academic community to support appropriate research for this group of therapeutic orphans. Support must also be provided to pharmaceutical companies in the development of suitable products with appropriate formulations.
Jamieson L; Wong I C; Craig F; Christiansen N; Brombley K; Tuleu C; Harrop E
Journal Of Pharmacy & Pharmacology
2017
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).
10.1111/jphp.12615