Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2024 Aug 6;23(1):202.
doi: 10.1186/s12904-024-01532-1.

A 15-year experience in pediatric palliative care: a retrospective hospital-based study

Mirella Schiavon  1 , Pierina Lazzarin  1 , Caterina Agosto  1 , Francesca Rusalen  1 , Antuan Divisic  1 , Anna Zanin  1 , Anna Mercante  2 , Valentina Mirisola  3 , Simonetta Papa  3 , Luca Giacomelli  3 , Franca Benini  4
Affiliations

A 15-year experience in pediatric palliative care: a retrospective hospital-based study

Mirella Schiavon et al. BMC Palliat Care. .

Abstract

Background: The current Italian scenario of pediatric palliative care (PPC) services is characterized by inadequate coverage of the territory. Therefore, it is important to improve the referral of patients to the most appropriate setting (community care, general PPC, or specialized PPC) and to improve the delivery of PPC care.

Methods: Aiming at obtaining information about the referrals to the Padua Pediatric Hospice that could help estimate the investments needed to improve the provision of care, a retrospective analysis has been carried out. The rate of proper referral and discharge, the number of patients followed at the hospice, the mortality rate, and the length of follow-up were analyzed, and, when possible, data were stratified by oncological and non-oncological diseases.

Results: The analysis showed that of the 870 patients referred to the Padua Pediatric Hospice between 2008 and 2022, 76% were affected by non-oncological conditions. 82% of patients referred were taken in charge and most of the remaining patients have been inappropriately referred. The analysis showed a growing number of total referrals, which increased by 195% from 2008 to 2022. An increase in proper referrals and referrals of non-oncological patients was observed alongside a decrease in oncological patient referrals and a trend toward a decrease in discharge rates. A decreased mortality was observed in patients with non-oncological conditions, with only 6% of deceased patients in 2022. Moreover, a longer survival with a median follow-up length of 43 months was observed among patients with non-oncological conditions who were followed up at the Padua Pediatric Hospice for more than 12 months. Conversely, the short survival rate observed for oncological patients suggests that those patients should have been referred to PPC earlier to benefit from palliative care for longer periods.

Conclusions: Considering these data, it is expected that the number of patients needing PPC services will steadily increase in the next years. Hence, there is a need to invest resources to provide the best care delivery model encompassing specific pathways for the transition into adulthood, the establishment of networks within all the Italian regions, and an efficient referral to the more suitable setting of care.

Keywords: Follow-up; Mortality; Pediatric palliative care.

PubMed Disclaimer

Conflict of interest statement

The authors declare that they have no competing interests.

Figures

Fig. 1
Fig. 1
The number and percentage of new referrals and patients taken in charge over the study period by year of referral
Fig. 2
Fig. 2
Patients followed at the hospice over the observation period stratified by oncological and non-oncological diseases and by year
See this image and copyright information in PMC

References

    1. Benini F, Papadatou D, Bernadá M, Craig F, De Zen L, Downing J, et al. International standards for Pediatric Palliative Care: from IMPaCCT to GO-PPaCS. J Pain Symptom Manage. 2022;63:e529–43. 10.1016/j.jpainsymman.2021.12.031. 10.1016/j.jpainsymman.2021.12.031 - DOI - PubMed
    1. World Health Organization. (2020). Global Atlas of Palliative Care, 2nd Ed 2020. (Accessed 5th May 2023). www.thewhpca.org/resources/global-atlas-on-end-of-life-care
    1. World Health Organization (WHO). Integrating palliative care and symptom relief into pediatrics: a WHO guide for health planners, implementers and managers. Geneva: World Health Organization; 2018. https://apps.who.int/iris/handle/10665/274561.
    1. Benini F, Bellentani M, Reali L, Lazzarin P, De Zen L, Pellegatta F, et al. An estimation of the number of children requiring pediatric palliative care in Italy. Ital J Pediatr. 2021;47:4. 10.1186/s13052-020-00952-y. 10.1186/s13052-020-00952-y - DOI - PMC - PubMed
    1. Accreditamento della rete di terapia del dolore. e cure palliative pediatriche https://www.sicp.it/wp-content/uploads/2021/04/CSR-cure-palliative-pedia...

LinkOut - more resources