Specialized Pediatric Palliative Care Services in Pediatric Hematopoietic Stem Cell Transplant Centers
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 Bader,
on behalf of the EBMT-Nurses Group,
Paediatric Diseases Working Party
Affiliations
Hilda Mekelenkamp
Willem-Alexander Children’s Hospital, Department of Pediatrics, Leiden University Medical Center, P.O. Box 9600, 2300 RC Leiden, The Netherlands
Teija Schröder
New Children’s Hospital, P.O. Box 347, 00029 Helsinki, Finland
Eugenia Trigoso
Paediatric Transplant Unit, Hospital University and Polytechnic Hospital LA FE, Avinguda de Fernando Abril Martorell, 106, 46026 Valencia, Spain
Daphna Hutt
Division of Pediatric Hematology and Oncology, The Edmond and Lily Safra Children’s Hospital, Sheba Medical Center, Ramat Gan 52621, Israel
Jacques-Emmanuel Galimard
EBMT Statistical Unit, CEDEX 12, 75571 Paris, France
Anne Kozijn
EBMT Leiden Study Unit, Rijnsburgerweg 10, 2333 AA Leiden, The Netherlands
Arnaud Dalissier
EBMT Paris Study Unit, CEDEX 12, 75571 Paris, France
Marjola Gjergji
Ospedale Pediatrico Bambino Gesù, Department of Onco-Hematology and Cell and Gene Therapy, Piazza di Sant’Onofrio, 4, 00165 Rome, Italy
Sarah Liptrott
IEO, European Institute of Oncology IRCCS, Via Ripamonti 435, 20141 Milan, Italy
Michelle Kenyon
Department of Haematological Medicine, King’s College Hospital NHS Foundation Trust, Denmark Hill, London SE5 9RS, UK
John Murray
Haematology and Transplant Unit, Christie Hospital NHS Foundation Trust, Wilmslow Road, Manchester M20 4BX, UK
Selim Corbacioglu
Department of Pediatric Hematology, Oncology and Stem Cell Transplantation, University of Regensburg, Franz-Josef-Strauss-Allee 11, 93052 Regensburg, Germany
Peter Bader
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
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.
