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

Abstract

Background Pediatric palliative care (PPC) addresses the physical and psychological needs of children suffering from life-limiting diseases. To define prevention and educational plans and to properly allocate resources, a precise estimation of the PPC burden is required. Objectives To estimate the current number of children requiring PPC in Italy, useful to assist policy-makers and healthcare bodies in the organization and allocation of PPC resources. Methods Literature data, The Global Atlas of Palliative Care at the End of Life and Italian national databases have been consulted. Results According to our estimation, at present, a total of 20,540–32,864 children in Italy require PPC (34–54 children/100,000 inhabitants) of whom 18 children/100,000 inhabitants require specialized PPC. Conclusions The present work is a fundamental tool to be used by the institutions, the local networks of PPC and the health programmers when formulating organizational models and care plans consistent with the actual need for PPC.

International Standards for Pediatric Palliative Care: From IMPaCCT to GO-PPaCS

“…According to the expected disease trajectory, medical conditions of eligibility for PPC have been classified into five categories (Table 2) (1,12). The fifth category involves unborn children with major health problems who may not live through birth, infants who may survive for only a few hours/days, infants with birth anomalies that may threaten vital functions, and infants for whom intensive care has been appropriately applied but developed an incurable disease (Table 2) (18,(26)(27)(28)(29)(30).…”

“…These figures are likely to increase over the next decades (2,6,18,41,45,46). However, the lack of data homogeneity, the diverse methods of data collection (prevalence vs incidence, with prevalence being more challenging to estimate than incidence since the latter is estimated only upon the child's death) and the heterogeneity of eligibility criteria for PPC adopted by different countries, make estimations a challenging process (18,47).…”

“…A recent meta-analysis of 24 studies clearly pointed out that children receiving specialized PPC have a better quality of life (QoL) with benefits for their families and the healthcare system (13)(14)(15). However, some barriers persist and prevent a standardized approach to PPC both in high-income countries and in settings with limited resources (3)(4)(5)13,(16)(17)(18). For instance, access to essential analgesic drugs (e.g., opioids) is still limited in many countries (2,19).…”

“…Due to all these barriers, it is not surprising that existing PPC standards are not widely applied in clinical practice, especially concerning the maintenance of good QoL throughout the entire life trajectory (19). Therefore, there is an urgent need for a critical revision and update of current recommendations and practices to promote a wider implementation of PPC standards in all countries and different settings (13,18,20,21).…”

Early pediatric palliative care involvement in a child with a large deletion of the short arm (p) of chromosome 10: a case report

“…The importance of providing such comprehensive care is also emphasized by the American Academy of Pediatrics (18) and this is particularly true for rare genetic conditions as the disease trajectory is often unknown. More than 20 million children are estimated to be eligible for PPC worldwide and this number is expected to increase over the next decade, resulting in intensive healthcare use (19,20). In Italy, Benini et al estimated the actual prevalence of children with PPC needs is 34-54 per 100,000 inhabitants of any age, accounting for a total of 20,540-32,864 children (20).…”