Given the overall poor coverage on the Italian territory, the PPC service in Italy needs to be further implemented through the establishment of PPC networks [4, 5]. Hence, a proper allocation of resources on the base of an accurate estimation of the actual burden of needs and the characterization of children requiring PPC in Italy is needed [1, 5].

Intending to gather information on the number of referrals and the follow-up length of patients in PPC, we retrospectively analyzed the information of the patients who were referred to the Padua Hospice over a 15-year period.

Among the 870 patients who were referred to the Padua Hospice between 2008 and 2022, the majority (76%) were affected by non-oncological conditions. This finding is not unexpected since it is in line with previous reports in the PPC setting [1, 5, 9, 10] and contradicts, at least in part, the common notion that PPC focuses on the ‘care of children with oncological disease at a terminal stage’ [1].

Notably, PPC patients affected by non-oncological conditions showed better survival rates than those with oncological disease (41% vs. 90%) since non-oncological conditions do not cause deaths as much as cancer does. For this reason, their follow-up in PPC was much longer (43 months vs. 1.8 months). Survival rates also increased over time. Indeed, approximately 40% of patients taken in charge are followed for more than 1 year and a remarkable proportion of children (28%) for more than five. Such a long period of follow-up translates into a continuous change in the needs of the patients due to the unpredictable course of some pathologies, the different phases of the condition or disease progression and due to the transition into adulthood [1].

Another expected finding is the short follow-up for patients in PPC with oncological conditions, whose mortality rate was also very high (90%). Since the overall survival rate for children with oncological disease not in PPC is increasing worldwide [11, 12], it is possible to speculate that, in our setting of care, children with cancer are referred to PPC only at a very late stage of the disease. It is possible to suggest that earlier referral would translate into a better quality of life for the patient and his/her family without any adverse impact on survival [11,12,13].

The analysis of the referrals per year shows a steady increase over the study period: in 2022, more than 100 patients were referred to our network, a 195% increase compared to 2008. The same increasing trend could be observed, at least in part, for the number of patients actually taken in charge (91% in 2022). These findings disclose an improvement in the overall implementation of the PPC in the Veneto Region, with higher coverage and more accurate referral of patients to be followed by a specialized service. Indeed, it is worth noting that in recent years, in the Veneto region, training has been given to PPC providers to support the identification of eligible patients and the activation of the PPC network and to educate them for integrated working. This certainly had a good impact on the activity of the network and the quality of the assistance provided. Also, the increased number of patients taken in charge of the Padua Hospice and their increasing survival account for the increasing number of patients followed each year (291 in 2022). It has to be considered that the longer survival of patients observed implies the necessity for the healthcare system to monitor the patients’ needs and dynamically and effectively adapt its response. This is the pathway followed until an eventual discharge if the patient does not require specialist intervention anymore, which in our data occurred in 10% of cases per year. These data highlight the importance of ensuring the enrollment and discharge of patients from specialized PPC by a shared and validated assessment (ACCAPED) of the individual patient’s needs [7].

Furthermore, there is an increase in the number of long-surviving pediatric patients who reach adulthood. Indeed, 16% of patients in charge of the Italian network are over 16 years old [14]. This emerging problem triggers the need for the establishment of an appropriate care model for the transition to adult services after having appropriately evaluated data, needs, resources, and available healthcare models. Currently, there is no determination of the age at which start the transition to adult palliative care [15]. In the UK patients are referred to specialist pediatric care from age 16 to 19 years before transitioning [16], and the transition is planned to occur around 18 years in the USA [17]. However, older patients with very complex syndromes can still be referred to pediatric palliative care services [18]. Collectively, these findings highlight a major burden for the PPC network in the Veneto Region, also increasing over time (a preliminary analysis of patients followed in 2023, still immature, seems to confirm the overall results). Data collected in a nationwide cross-sectional study also confirm the high number of patients followed by PPC services in Italy [14].

This prompts an adequate allocation of resources and, at the same time, the establishment of dedicated educational curricula for healthcare providers potentially involved in PPC [1, 14]. Moreover, educative and awareness campaigns should be implemented since parents/patients are still afraid of accessing services because they believe that palliative care is treatment aimed only at dying children. In addition, appropriate communication focused on the role of PPCs in providing treatments to manage incurable diseases and on the rights that each child and his/her family have in this area could help address the cultural challenge around PPC services.

Although our data were collected retrospectively, the present study can represent the basis for the prospective collection of data that will help keep track of the burden of PPC and monitor the epidemiology of patients. Indeed, further studies are needed to collect data on patients who have been recently taken into charge by PPC services.

It could also be helpful to extend this study design to national and international levels to collect comprehensive data on this often-neglected research field and to consolidate PPC networks.