PPC is essential for providing comprehensive, compassionate, and family-centered support for children with life-limiting and life-threatening conditions and their families, helping children to live as comfortably and fully as possible [1]. This includes managing pain, addressing emotional and spiritual needs, and promoting overall well-being throughout the course of the illness. Specialized PPC involves a multidisciplinary team of healthcare professionals working together to provide consistent and coordinated care [1]. This ensures that the child receives comprehensive and continuous support, regardless of changes in their condition. Accordingly, PPC is recognized as a right for children and their families [1, 6].

The complexity of the clinical situation of patients requiring specialized PPC pose real challenges in defining an organizational model able to meet the needs of these patients and their families. At the same time, continuous evolution parallels the ever-changing needs of patients in terms of treatment options, instruments, and supporting technologies. In this context, it is necessary to work on the definition of strategies and tools that allow patients in need of PPC and their families continuous preservation and improvement in their quality of life.

Up to date, few studies have addressed specialized PPC development and provision at the national level and the available data report an uneven availability of PPC services in Europe [10]. In particular, 19 out of 51 considered European countries, including Italy, reported specific standards and norms for the provision of PPC [10, 11]. In 48 of these 51 countries, 680 CPP provision units have been reported, divided into: 133 hospices in 21 countries; 385 Home Palliative Care Units in 29 countries; 162 In-hospital services in 27 countries; in seven countries, including Italy, at least one referral center for perinatal palliative care has been reported [11]. Overall, 22 countries had a national association, and 14 countries reported to offer education for either pediatricians or nurses [10]. PPC development was less accentuated in low- to middle-income countries [10]. Overall, these data suggest a global need for strategies to regulate and improve the provision of specialized PPC at a national level.

In the Italian scenario, the law 38/2010 promotes the creation of regional and national networks of palliative and pain care centers, coordinated by at least one regional referral center, to ensure the continuity of care from hospital to home through multidisciplinary clinical pathways (art. 2; art. 5) [8]. The Ministry of Health also promotes information campaigns involving all healthcare professionals and the population to spread public opinion and awareness of the relevance of PPC and pain management (art. 4) [8]. The above-mentioned law also supports educational and experimental programs that should implement the coordination and integration of the PPC services in the territory (art. 6) [8].

To enable the implementation of the organizational model promoted by the Ministry of Health, the assessment of the extent and quality of regional specialized PPC networks/facilities and the number of dedicated resources, as well as the characterization of this model of care, represent necessary steps for resource allocation by the NHS.

PalliPed is the first Italian nationwide project to collect and describe the characteristics of the Italian specialized PPC networks and facilities. Through a self-reported online survey, the activity of 19 PPC centers/facilities from 12 Italian regions and two autonomous provinces was described, providing the first comprehensive assessment of the extent and quality of PPC in Italy.

Among the 19 participating centers, 11 are regional referral centers. Seven Italian regions, mainly in central-southern Italy, reported no PPC centers/facilities. Overall, 1,092 patients were followed by 18 centers as of 24 October 2022.

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.

Over the years, an increasing number of patients has been reported, rising from 1,202 (2019) to 1,544 (2021). According to previous estimates, the number of children requiring specialized PPC in Italy in 2021 was about 10,600 [5]. This suggests that, in the study period, the need for PPC was covered by only 15%. Therefore, despite the upward trend, the number of patients reported is far lower than the estimated number of children needing PPC. Causes of a low number of patients cared by PPC are diverse and intersecting. There is a basic cultural factor, for which PPCs are not an easy topic to discuss because they are assimilated to end-of-life care, to which is added the poor training of operators, who struggle to recognize the needs of patients and therefore to refer patients to referral centers. In addition, accessibility to the service is significantly limited, due to the limited number of dedicated centers and resources. This suggests that specialized PPC service in Italy is still scantly diffused, and requires prompt improvement by promoting a widespread and more organized system of care to cover the estimated need for PPC.

The resources in terms of dedicated staff are not adequate, and often, the team is only available on an as-needed or volunteer basis, with most healthcare providers not recognized at an institutional level. Moreover, a shortage of ‘young’ staff, with most healthcare providers over 46 years old, and a lack of specific training, particularly among nurses (77% with no training in PPC), emerged.

The data collected within this project emphasize the need for a greater effort to provide for the reorganization of care models and resources in PPC, to enable the proper implementation of the organizational model promoted by the Ministry of Health, since the number of children needing PPC is constantly increasing [12, 13]. In this context, the challenge for the future is the management of chronicity, especially for incurability and dependence on life-saving devices. At the same time, the evolving care environment within the PPC poses the problem of the economic sustainability of the proposed models and their networks [14]. While these allow quality and assistance to be ensured to PPC patients and their families, the lack of dedicated funding and support programs can lead to a slowdown in the realization and implementation of care pathways and networks, strongly impacting the actual possibility of assistance for these patients. Our study presents some limitations, such as the survey design and the self-reporting method of data collection. However, the PalliPed project establishes the first comprehensive database on the extent and quality of specialized PPC service in Italy, representing a fundamental step to support and facilitate the implementation and monitoring of the NHS support measures for PPC networks and facilities.