Pedraza Eddy Carolina, Raguindin Peter Francis, Hendriks Manya Jerina, Vokinger Anna Katharina, De Clercq Eva, Rüesch Katja, Hjorth Lars, von Bueren André Oscar, Tinner Eva Maria, Bergstraesser Eva, Wiener Lori, Michel Gisela
Faculty of Health Sciences and Medicine, University of Lucerne, Lucerne, Switzerland.
Department of Clinical Sciences Lund, Paediatrics, Skane University Hospital, Lund University, Lund, Sweden.
EJC Paediatr Oncol. 2023 Dec;2. doi: 10.1016/j.ejcped.2023.100125. Epub 2023 Nov 14.
Palliative care (PC) is an integral part of cancer treatment. However, data on service availability is limited in childhood cancers.
To describe the availability of PC services in paediatric oncology centres across Europe, and to identify barriers and facilitators for implementing and providing paediatric palliative care (PPC).
Paediatric oncology centres across Europe were invited to complete an online questionnaire.
A total of 158 paediatric oncology centres from 27 European countries participated. More than half of the centres (n=102, 64.6%) reported offering specialised PPC (defined as 24/7 coverage services with specialized physician and a multidisciplinary team). Most centres included a multidisciplinary care team (n=123, 80.9%) and PC at home (n=105, 69.1%). In 38.7% centres, service capacity was reported to be lower than demand. In most centres, PC consultation was initiated for a refractory neoplasm (n=126, 81.2%). Few centres (n=11, 7.1%) offered PC consultation at the time of a new cancer diagnosis. Eighty-two centres (52.6%) reported having bereavement services. Negative parental perception (n=99, 64.7%) and late referrals (n=91, 59.5%) were major barriers to implementation perceived by health care providers.
Our results suggest that specialised PPC is available in more than half of paediatric oncology settings across Europe. Although half have had PPC available for >10 years, many cannot fulfil the demand for service. Barriers to implementation (i.e., parental education, staff training) should be addressed, with resources and services further expanded to cover the demand for PPC, including bereavement care.
姑息治疗（PC）是癌症治疗的一个组成部分。然而，关于儿童癌症服务可及性的数据有限。
描述欧洲儿科肿瘤中心姑息治疗服务的可及性，并确定实施和提供儿童姑息治疗（PPC）的障碍和促进因素。
邀请欧洲各地的儿科肿瘤中心填写一份在线问卷。
来自27个欧洲国家的158家儿科肿瘤中心参与了调查。超过一半的中心（n = 102，64.6%）报告提供专门的PPC（定义为由专科医生和多学科团队提供的全天候服务）。大多数中心包括多学科护理团队（n = 123，80.9%）和居家姑息治疗（n = 105，69.1%）。38.7%的中心报告服务能力低于需求。在大多数中心，PPC咨询是针对难治性肿瘤发起的（n = 126，81.2%）。很少有中心（n = 11，7.1%）在新癌症诊断时提供PPC咨询。82个中心（52.6%）报告提供丧亲服务。医疗服务提供者认为，家长的负面看法（n = 99，64.7%）和转诊延迟（n = 91，59.5%）是实施PPC的主要障碍。
我们的结果表明，欧洲一半以上的儿科肿瘤机构提供专门的PPC。虽然一半的机构提供PPC服务已超过10年，但许多机构无法满足服务需求。应解决实施障碍（如家长教育、工作人员培训），并进一步扩大资源和服务，以满足对PPC的需求，包括丧亲护理。
