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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. [ABSTRACT FROM AUTHOR]

Background: Accurate estimation of the specialized pediatric palliative care (PPC) burden and the definition of the extent and quality of PPC service in Italy represent urgent needs to enable the proper allocation of PPC resources and the definition of prevention and educational plans. The PalliPed project aimed to provide the first comprehensive assessment of the characteristics of Italian patients requiring PPC, the quality and extent of regional PPC networks/facilities, and the number of dedicated resources. In this paper, we present the results of the second part of the project, regarding the implementation and quality of PPC services in Italy. Methods: The PalliPed study had an observational cross-sectional design. All Italian specialized PPC centers/facilities were invited to participate in the project and complete a survey on the characteristics of PPC centers/facilities in different care settings, reporting data as of 24 October 2022. Data were collected online. Results: 19 PPC specialized centers/facilities from 12 Italian regions and two autonomous provinces responded to the survey. Among them, 11 are regional referral centers. Seven Italian regions out of 20 reported no PPC centers/facilities, mainly in central-southern Italy. Less than half (45%) of the regional referral centers cover the entire regional territory, and three offer 24/7 service. Ten centers have a dedicated team. Half of the eight non-referral centers offer 24/7 service and have a dedicated team. A total of 1,092 patients were reported by 18 centers as of 24 October 2022. Over the years, an increasing number of patients has been reported, rising from 1,202 (2019) to 1,544 (2021). The dedicated staff is inadequate, and most healthcare providers are not recognized at an institutional level. A shortage of 'young' staff and a lack of specific training was reported, particularly among nurses (77% had no training in PPC). Conclusions: The results obtained show how training, information, and research interventions are still necessary for the reorganization of the available resources and definition of proper strategies to respond dynamically to the new emerging needs of these populations. At the same time, our study represents a first step in defining a national registry of PPC models, useful for monitoring evolutions, and critical issues and planning any new or corrective strategy. [ABSTRACT FROM AUTHOR]