Related Experiment Video
Updated: Oct 22, 2025
CRISPR/Cas9 Gene Editing of Hematopoietic Stem and Progenitor Cells for Gene Therapy Applications
Published on: August 9, 2022
Specialized Pediatric Palliative Care Services in Pediatric Hematopoietic Stem Cell Transplant Centers
Hilda Mekelenkamp1, Teija Schröder2, Eugenia Trigoso3
1Willem-Alexander Children's Hospital, Department of Pediatrics, Leiden University Medical Center, P.O. Box 9600, 2300 RC Leiden, The Netherlands.
Insights
Pediatric hematopoietic stem cell transplantation (HSCT) patients often die in hospitals. Integrating specialized pediatric palliative care services (SPPCS) early can improve end-of-life care and preparation.
Area of Science:
- Pediatric Hematology
- Oncology
- Palliative Care
Background:
- Hematopoietic stem cell transplantation (HSCT) offers curative potential for pediatric life-threatening conditions.
- HSCT is an intensive treatment associated with significant risks, including mortality.
- Understanding end-of-life care patterns and palliative care integration is crucial for improving outcomes.
Purpose of the Study:
- To analyze the place and causes of death in pediatric HSCT patients.
- To assess the availability and utilization of specialized pediatric palliative care services (SPPCS).
- To determine HSCT professionals' perspectives on the ideal role of SPPCS for their patients.
Main Methods:
- Retrospective analysis of a database of 233 pediatric HSCT patients' place and cause of death.
- A survey distributed to 98 HSCT professionals across 54 centers regarding SPPCS availability and perceived utility.
Main Results:
- The majority of pediatric HSCT patients died in-hospital (38% in PICU, 20% in HSCT units, 17% in other hospital wards).
- Less than half of HSCT professionals surveyed routinely referred patients to SPPCS early in the treatment course.
- Nearly all professionals agreed on the necessity of SPPCS for HSCT patients, particularly for pain management.
Conclusions:
- There is a need to enhance the integration of SPPCS into pediatric HSCT care pathways.
- Early advance care planning, ideally from diagnosis, is recommended for pediatric HSCT patients.
- Proactive integration of SPPCS can optimize end-of-life preparation and patient care.
Abstract:
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.
Related Concept Videos
01:21Stem Cell Therapy for Tissue Regeneration
Types of Stem Cells used in Stem Cell Therapy
The two main cell...
01:22Bone Marrow Sampling and Transplants
The transplant begins with high doses of chemotherapy and radiation treatment, which aim to destroy...
01:30Specialized Care Centers and Settings-I
Daycare centers
They provide several functions. Some facilities care for healthy newborns and children whose parents work, while others are medically focused and care for...
01:30Specialized Care Centers and Settings-II
Rural health centers are specialized care facilities in remote locations with very few medical personnel. The primary care providers who run the centers are mostly Registered Nurse Practitioners. Here, emergency treatment is provided to critically ill or injured patients before they are transferred to the closest hospital. Fortunately, due to advancement in technology, many rural healthcare facilities and professionals have easy access to diagnostic and treatment...
01:01Regulation of Hematopoietic Stem Cells
01:25Continuing Care