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

被引：7

作者：

Mekelenkamp, Hilda ^{[1
]}

Schroder, Teija ^{[2
]}

Trigoso, Eugenia ^{[3
]}

Hutt, Daphna ^{[4
]}

Galimard, Jacques-Emmanuel ^{[5
]}

Kozijn, Anne ^{[6
]}

Dalissier, Arnaud ^{[7
]}

Gjergji, Marjola ^{[8
]}

Liptrott, Sarah ^{[9
]}

Kenyon, Michelle ^{[10
]}

Murray, John ^{[11
]}

Corbacioglu, Selim ^{[12
]}

Bader, Peter ^{[13
]}

机构：

[1] Leiden Univ, Willem Alexander Childrens Hosp, Dept Pediat, Med Ctr, POB 9600, NL-2300 RC Leiden, Netherlands

[2] New Childrens Hosp, POB 347, Helsinki 00029, Finland

[3] Hosp Univ & Polytech Hosp LA FE, Paediat Transplant Unit, Avinguda de Fernando Abril Martorell 106, Valencia 46026, Spain

[4] Sheba Med Ctr, Edmond & Lily Safra Childrens Hosp, Div Pediat Hematol & Oncol, IL-52621 Ramat Gan, Israel

[5] EBMT Stat Unit, F-75571 Paris 12, France

[6] EBMT Leiden Study Unit, Rijnsburgerweg 10, NL-2333 AA Leiden, Netherlands

[7] EBMT Paris Study Unit, F-75571 Paris 12, France

[8] Osped Pediat Bambino Gesu, Dept Oncohematol & Cell & Gene Therapy, Piazza St Onofrio 4, I-00165 Rome, Italy

[9] European Inst Oncol IRCCS, IEO, Via Ripamonti 435, I-20141 Milan, Italy

[10] Kings Coll Hosp NHS Fdn Trust, Dept Haematol Med, Denmark Hill, London SE5 9RS, England

[11] Christie Hosp NHS Fdn Trust, Haematol & Transplant Unit, Wilmslow Rd, Manchester M20 4BX, Lancs, England

[12] Univ Regensburg, Dept Pediat Hematol Oncol & Stem Cell Transplanta, Franz Josef Strauss Allee 11, D-93052 Regensburg, Germany

[13] Goethe Univ, Univ Hosp Frankfurt, Dept Children & Adolescents, Div Stem Cell Transplantat Immunol & Intens Care, Theodor Stern Kai 7, D-60590 Frankfurt, Germany

来源：

CHILDREN-BASEL | 2021年 / 8卷 / 08期

关键词：

hematopoietic stem cell transplantation; palliative care; palliative care services; pediatric; COMPLEX CHRONIC CONDITIONS; CHILDREN; LIFE; END; PERSPECTIVES; PATTERNS; CANCER; PLACE; DEATH;

D O I：

10.3390/children8080615

中图分类号：

R72 [儿科学];

学科分类号：

100202 ;

摘要：

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.

引用

页数：12

共 34 条

[21] Grief and Bereavement in Parents After the Death of a Child in Low- and Middle-Income Countries [J].