意大利的专科儿科姑息治疗：我们将何去何从？Palliped 2022 - 2023研究。

Specialized pediatric palliative care in Italy: where are we going? The Palliped 2022-2023 study.

作者信息

Benini Franca, Mercante Anna, Di Nunzio Sara, Papa Simonetta

机构信息

Pediatric Palliative Care, Pain Service, Department of Women's and Children's Health, University Hospital of Padua, Padua, Italy.

Department of Biomedical and Neuromotor Sciences (DIBINEM), University of Bologna, Bologna, Italy.

出版信息

Ital J Pediatr. 2025 Jan 25;51(1):15. doi: 10.1186/s13052-025-01850-x.

DOI:10.1186/s13052-025-01850-x

PMID:39863900

原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11763133/

Abstract

BACKGROUND

The PalliPed project is a nationwide, observational, cross-sectional study designed with the aim of providing a constantly updated national database for the census and monitoring of specialized pediatric palliative care (PPC) activities in Italy. This paper presents the results of the first monitoring phase of the PalliPed project, which was developed through the PalliPed 2022-2023 study, to update current knowledge on the provision of specialized PPC services in Italy.

METHODS

Italian specialized PPC centers/facilities were invited to participate and asked to complete a self-reporting, ad-hoc, online survey regarding their clinical activity in 2022-2023, in the revision of the data initially collected in the first PalliPed study of 2021.

RESULTS

18 specialized PPC centers/facilities from 14 Italian regions and two autonomous provinces participated; 13 were identified as regional referral centers (72.2%), with the acquisition of three new centers in comparison to 2021. Full coverage of the regional territory was reported by 54% of them, compared with 45% in 2021, while a 24/7 service was offered by 23%, compared with 27% in 2021. Eight of 13 referral centers (61%) had a dedicated team, compared with 91% in 2021. Also, an overall increase in the number of followed patients was observed, rising from 1,209 (2019) to 2,734 (2023). In line with previous data, most PPC healthcare providers were nurses (n = 181) and physicians (n = 89), with an overall increased number of PPC providers from 2021.

CONCLUSIONS

The nationwide PalliPed project established the first comprehensive overview and monitoring of the state of specialized PPC in Italy. Data reported within the PalliPed 2022-2023 monitoring study suggest a general improving trend in the availability of the specialized PPC service in Italy, compared with data collected in 2021. At the same time, the need for a greater effort to provide better care models and resources for specialized PPC remains, especially considering that the number of children needing PPC is constantly increasing.

摘要

背景

PalliPed项目是一项全国性的观察性横断面研究，旨在建立一个不断更新的国家数据库，用于普查和监测意大利的儿科专科姑息治疗（PPC）活动。本文介绍了PalliPed项目第一阶段监测的结果，该阶段通过PalliPed 2022 - 2023研究开展，以更新意大利专科PPC服务提供情况的现有知识。

方法

邀请意大利的专科PPC中心/机构参与，并要求其就2022 - 2023年的临床活动完成一份专门的在线自填式调查问卷，同时对2021年首次PalliPed研究中最初收集的数据进行修订。

结果

来自意大利14个地区和两个自治省的18个专科PPC中心/机构参与了调查；13个被确定为区域转诊中心（72.2%），与2021年相比新增了3个中心。其中54%的中心报告称其覆盖了所在区域的全部范围，2021年这一比例为45%；23%的中心提供全天候服务，2021年为27%。13个转诊中心中有8个（61%）拥有专门的团队，2021年这一比例为91%。此外，观察到随访患者数量总体有所增加，从2019年的1209例增至2023年的2734例。与之前的数据一致，大多数PPC医疗服务提供者是护士（n = 181）和医生（n = 89），与2021年相比PPC服务提供者的总数有所增加。

结论

全国性的PalliPed项目首次全面概述和监测了意大利专科PPC的状况。PalliPed 2022 - 2023监测研究报告的数据表明，与2021年收集的数据相比，意大利专科PPC服务的可及性总体呈改善趋势。与此同时，仍需要做出更大努力，为专科PPC提供更好的护理模式和资源，尤其是考虑到需要PPC的儿童数量在不断增加。