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Palliative care services in paediatric oncology centres across Europe : A cross-sectional survey

Pedraza, Eddy Carolina ; Raguindin, Peter Francis ; Hendriks, Manya Jerina ; Vokinger, Anna Katharina ; De Clercq, Eva ; Rüesch, Katja ; Hjorth, Lars LU ; von Bueren, André Oscar ; Tinner, Eva Maria and Bergstraesser, Eva , et al. (2023) In EJC Paediatric Oncology 2.
Abstract

Background: Palliative care (PC) is an integral part of cancer treatment. However, data on service availability is limited in childhood cancers. Aim: 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). Methods: Paediatric oncology centres across Europe were invited to complete an online questionnaire. Results: 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 a specialised physician and a multidisciplinary team). Most centres included a... (More)

Background: Palliative care (PC) is an integral part of cancer treatment. However, data on service availability is limited in childhood cancers. Aim: 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). Methods: Paediatric oncology centres across Europe were invited to complete an online questionnaire. Results: 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 a specialised 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. Conclusion: 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.

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@article{b9f49d09-e959-4c36-a41e-ab312abff111,
  abstract     = {{<p>Background: Palliative care (PC) is an integral part of cancer treatment. However, data on service availability is limited in childhood cancers. Aim: 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). Methods: Paediatric oncology centres across Europe were invited to complete an online questionnaire. Results: 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 a specialised 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. Conclusion: 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 &gt; 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.</p>}},
  author       = {{Pedraza, Eddy Carolina and Raguindin, Peter Francis and Hendriks, Manya Jerina and Vokinger, Anna Katharina and De Clercq, Eva and Rüesch, Katja and Hjorth, Lars and von Bueren, André Oscar and Tinner, Eva Maria and Bergstraesser, Eva and Wiener, Lori and Michel, Gisela}},
  issn         = {{2772-610X}},
  keywords     = {{Bereavement; Childhood cancer; Health services; Integrative Oncology; Paediatrics; Palliative care; Palliative supportive care; Patient care; Services}},
  language     = {{eng}},
  publisher    = {{Elsevier}},
  series       = {{EJC Paediatric Oncology}},
  title        = {{Palliative care services in paediatric oncology centres across Europe : A cross-sectional survey}},
  url          = {{http://dx.doi.org/10.1016/j.ejcped.2023.100125}},
  doi          = {{10.1016/j.ejcped.2023.100125}},
  volume       = {{2}},
  year         = {{2023}},
}