Specialized pediatric palliative care services in pediatric hematopoietic stem cell transplant centers

  • 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.

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Author:Hilda Mekelenkamp, Teija Schröder, Eugenia Trigoso, Daphna Hutt, Jacques-Emmanuel Galimard, Anne Kozijn, Arnaud Dalissier, Marjola Gjergji, Sarah Liptrott, Michelle Kenyon, John Murray, Selim Corbacioglu, Peter BaderORCiDGND
Parent Title (English):Children
Place of publication:Basel
Document Type:Article
Date of Publication (online):2021/07/21
Date of first Publication:2021/07/21
Publishing Institution:Universitätsbibliothek Johann Christian Senckenberg
Contributing Corporation:EBMT-Nurses Group; Paediatric Diseases Working Party
Release Date:2021/11/09
Tag:hematopoietic stem cell transplantation; palliative care; palliative care services; pediatric
Issue:8, art. 615
Page Number:12
First Page:1
Last Page:12
Dewey Decimal Classification:6 Technik, Medizin, angewandte Wissenschaften / 61 Medizin und Gesundheit / 610 Medizin und Gesundheit
Licence (German):License LogoCreative Commons - Namensnennung 4.0