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Clinical Characteristics of the End-of-Life Phase in Children with Life-Limiting Diseases: Retrospective Study from a Single Center for Pediatric Palliative Care
 
 
Article

Specialized Pediatric Palliative Care Services in Pediatric Hematopoietic Stem Cell Transplant Centers

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Willem-Alexander Children’s Hospital, Department of Pediatrics, Leiden University Medical Center, P.O. Box 9600, 2300 RC Leiden, The Netherlands
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New Children’s Hospital, P.O. Box 347, 00029 Helsinki, Finland
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Paediatric Transplant Unit, Hospital University and Polytechnic Hospital LA FE, Avinguda de Fernando Abril Martorell, 106, 46026 Valencia, Spain
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Division of Pediatric Hematology and Oncology, The Edmond and Lily Safra Children’s Hospital, Sheba Medical Center, Ramat Gan 52621, Israel
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EBMT Statistical Unit, CEDEX 12, 75571 Paris, France
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EBMT Leiden Study Unit, Rijnsburgerweg 10, 2333 AA Leiden, The Netherlands
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EBMT Paris Study Unit, CEDEX 12, 75571 Paris, France
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Ospedale Pediatrico Bambino Gesù, Department of Onco-Hematology and Cell and Gene Therapy, Piazza di Sant’Onofrio, 4, 00165 Rome, Italy
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IEO, European Institute of Oncology IRCCS, Via Ripamonti 435, 20141 Milan, Italy
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Department of Haematological Medicine, King’s College Hospital NHS Foundation Trust, Denmark Hill, London SE5 9RS, UK
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Haematology and Transplant Unit, Christie Hospital NHS Foundation Trust, Wilmslow Road, Manchester M20 4BX, UK
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Department of Pediatric Hematology, Oncology and Stem Cell Transplantation, University of Regensburg, Franz-Josef-Strauss-Allee 11, 93052 Regensburg, Germany
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Division for Stem Cell Transplantation, Immunology and Intensive Care Medicine, Department for Children and Adolescents, University Hospital Frankfurt, Goethe University, Theodor-Stern-Kai 7, 60590 Frankfurt, Germany
*
Author to whom correspondence should be addressed.
Academic Editor: Erna Michiels
Children 2021, 8(8), 615; https://doi.org/10.3390/children8080615
Received: 11 June 2021 / Revised: 15 July 2021 / Accepted: 18 July 2021 / Published: 21 July 2021
(This article belongs to the Special Issue Palliative Care for Childhood Cancer)
Hematopoietic stem cell transplantation (HSCT) is widely used in pediatric patients as a successful curative therapy for life-threatening conditions. The treatment is intensive, with risks of serious complications and lethal outcomes. This study aimed to provide insight into current data on the place and cause of death of transplanted children, the available specialized pediatric palliative care services (SPPCS), and what services HSCT professionals feel the SPPCS team should provide. First, a retrospective database analysis on the place and cause of death of transplanted pediatric HSCT patients was performed. Second, a survey was performed addressing the availability of and views on SPPCS among HSCT professionals. Database analysis included 233 patients of whom the majority died in-hospital: 38% in the pediatric intensive care unit, 20% in HSCT units, 17% in other hospitals, and 14% at home or in a hospice (11% unknown). For the survey, 98 HSCT professionals from 54 centers participated. Nearly all professionals indicated that HSCT patients should have access to SPPCS, especially for pain management, but less than half routinely referred to this service at an early stage. We, therefore, advise HSCT teams to integrate advance care planning for pediatric HSCT patients actively, ideally from diagnosis, to ensure timely SPPCS involvement and maximize end-of-life preparation. View Full-Text
Keywords: hematopoietic stem cell transplantation; palliative care; palliative care services; pediatric hematopoietic stem cell transplantation; palliative care; palliative care services; pediatric
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MDPI and ACS Style

Mekelenkamp, H.; Schröder, T.; Trigoso, E.; Hutt, D.; Galimard, J.-E.; Kozijn, A.; Dalissier, A.; Gjergji, M.; Liptrott, S.; Kenyon, M.; Murray, J.; Corbacioglu, S.; Bader, P.; on behalf of the EBMT-Nurses Group; Paediatric Diseases Working Party. Specialized Pediatric Palliative Care Services in Pediatric Hematopoietic Stem Cell Transplant Centers. Children 2021, 8, 615. https://doi.org/10.3390/children8080615

AMA Style

Mekelenkamp H, Schröder T, Trigoso E, Hutt D, Galimard J-E, Kozijn A, Dalissier A, Gjergji M, Liptrott S, Kenyon M, Murray J, Corbacioglu S, Bader P, on behalf of the EBMT-Nurses Group, Paediatric Diseases Working Party. Specialized Pediatric Palliative Care Services in Pediatric Hematopoietic Stem Cell Transplant Centers. Children. 2021; 8(8):615. https://doi.org/10.3390/children8080615

Chicago/Turabian Style

Mekelenkamp, Hilda, Teija Schröder, Eugenia Trigoso, Daphna Hutt, Jacques-Emmanuel Galimard, Anne Kozijn, Arnaud Dalissier, Marjola Gjergji, Sarah Liptrott, Michelle Kenyon, John Murray, Selim Corbacioglu, Peter Bader, on behalf of the EBMT-Nurses Group, and Paediatric Diseases Working Party. 2021. "Specialized Pediatric Palliative Care Services in Pediatric Hematopoietic Stem Cell Transplant Centers" Children 8, no. 8: 615. https://doi.org/10.3390/children8080615

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