An estimation of the number of children requiring pediatric palliative care in Italy

Science and technology have led to an increase in survival of many children suffering from life-limiting diseases (LLDs). On the other hand, these children live with incurable diseases throughout their lives. Consequently, a new category of pediatric patients with different needs emerged. Pediatric palliative care (PPC) is aimed to address the physical and psychological needs of these children and their families and to provide a major improvement in their quality of life [1, 2] with the definition of new approaches for this peculiar setting [3, 4]. Furthermore, PPC largely differs from adult palliative care (PC), due to the broad spectrum of diseases – many of which are typical in childhood – and the complexity of biological, physical, emotional and spiritual needs of those who are pediatric aged [4].

At present, it is estimated that more than 20 million children are eligible for PPC worldwide, and this figure is likely to increase over the next decade. However, different critical issues to attempt to define PPC needs still exist. Indeed, the lack of homogeneity in the few available data, where the diverse methods for data collection (prevalence or incidence) and the heterogeneity in the eligibility criteria adopted (general or specialized PPC) [4] limit the possibility to compare different numbers.

Consequently, to define prevention and educational plans and to properly allocate PPC resources, a precise estimation of the PPC burden remains an urgent requirement.

A prevalence survey performed in Italy in 2009, with very restrictive inclusion criteria, showed that at least 12,000 children were eligible for PPC (10 minors out of 10,000) [5].

Today, in Italy, the number of children who need PPC is estimated to be more than twice compared to previous estimates, similar to what has happened in other European countries (e.g. UK). However, this estimate remains uncertain and limits, at least in part, the policy-makers in the organization of this fundamental service.

In this paper, we estimate the current number of children requiring PPC in Italy (referred to 100,000 inhabitants), also in comparison to the Italian adult population, with the aim to assist policy-makers and healthcare bodies in the organization and allocation of dedicated resources for PPC.

For the present work, we evaluated: (i) the prevalence of needs for PPC and specialized PPC (i.e., PPC in a dedicated setting by a multidisciplinary team of experts in PPC [4]); and (ii) incidence of the need for PPC, using the event of death as indicator and reporting data to a total of 100,000 inhabitants (including both the children and adult populations) and per 10,000 children.

An evaluation of literature (PubMed and Cochrane databases) on PPC and adult PC was conducted, without specific limitations in the search. The search was last updated in August 2020. The Authors’ own personal collections of literature were also browsed.

The Global Atlas of Palliative Care at the End of Life published by The World Health Organization (WHO) and the Worldwide Palliative Care Alliance (WPCA) has also been consulted, even if this document is based only on the need of PC at the end of life (WPCA-WHO Global Atlas of Palliative care at the end of life) [6].

Last, we browsed Italian national databases (Istituto Nazionale di Statistica [ISTAT]) to integrate retrieved data with demographic information for the Italian population.

PPC largely differ from palliative care delivered in the adult setting, due to the heterogeneity of patients and disease, different criteria for the eligibility to PPC, and the diverse needs of pediatric age [4, 9]. Moreover, although the number of adult patients requiring palliative care are undoubtedly more than the number of children in PPC, the journey of a patient within the PPC setting can last for several years. Therefore, dedicated planning and proper allocation of resources is paramount to ensure the best possible management of children in PPC, given also the expected increase of the number of children requiring this medical service in the incoming years [4, 7]. The estimation of the PPC burden represents a necessary step for the allocation of resources by the National Healthcare system. To our knowledge, such estimation is not immediately available for the Italian scenario.

According to our estimation, and taking into account the heterogeneity of data, at present, 34–54 children/100,000 inhabitants of any age in Italy require PPC, accounting for a total of 20,540–32,864 children. Furthermore, 18 children/100,000 inhabitants require specialized PPC, i.e. the delivery of continuous PPC in a dedicated and specialized setting by a multidisciplinary team of experts. These estimations require healthcare regulatory bodies to strengthen healthcare systems through the availability of essential treatments, staff training, public education and community support. Indeed, in this perspective, without improving the integration of PC into healthcare systems, both the inability to alleviate the suffering of patients and the pressure on healthcare systems will increase. In addition, the comparison with the PC demand in adult patients provides a further indication to promote a balanced division of resources between these two settings, which have different specific needs.

The present paper should be considered by the national and regional institutions, the local networks of PPC and the health programmers of the health institutions when formulating organizational models and care plans consistent with the actual need for PPC.