A Nationwide Study to Evaluate Accessibility to Specialized Pediatric Palliative Care in Italy-Patients, Needs, and Critical Issues: The PalliPed Study
Title
A Nationwide Study to Evaluate Accessibility to Specialized Pediatric Palliative Care in Italy-Patients, Needs, and Critical Issues: The PalliPed Study
Creator
Benini F; Mercante A; Di Nunzio S; Papa S; Agosto C; Albanesi B; Amarri S; Avagnina I; Barbugian E; Basile R; Bellagamba O; Bellini F; Beltrami C; Bignamini E; Bolognani M; Campagna M; Carraro C; Catalano G; Catalano I; Celentano L; De Marinis MG; De Tommasi V; De Zen L; Divisic A; Dolcini A; Fasson A; Franchi F; Ghiraldo G; Giacomelli L; Grigolon E; Iadelica A; Lazzarin P; Maghini I; Manfredini L; Marinetto A; Mazzoni E; Michelotto E; Mirone R; Molinaro G; Moliterni P; Moro N; Orofino R; Paone G; Pellegatta F; Peruselli C; Piccolruaz UV; Raspi M; Roverato B; Salata M; Santini A; Schiavon B; Soffritti S; Taucar V; Thaler M; Tornesello A; Uez F; Vaccher S; Vezzoli C; Zanin A; Ziggiotto S
Identifier
Publisher
Journal of Palliative Medicine
Date
2024
Subject
Italy; palliative therapy; terminal disease; adolescent; article; child; controlled study; diagnosis; family support; health care personnel; home care; human; infant; maternal care; patient referral; pediatrician; prenatal care; therapy; young adult
Description
Background: PalliPed is the first Italian nationwide project aimed at describing the characteristics of patients accessing specialized pediatric palliative care (PPC) and their families, in the main care settings (hospice, home care, and hospital). The project's secondary aim is to assess the extent and quality of regional PPC networks/facilities and the number of dedicated resources. In this article, we present the results of the first part of the project. <br/>Method(s): All Italian PPC centers/facilities were invited to participate in the project. Children and young adults in the care of the specialized PPC networks/structures as of 24 October, 2022, including prenatal care, were involved. Children's eligibility for specialized PPC was assessed according to the Assessment Form for Complex Clinical Needs in Pediatrics (ACCAPED Scale) and after a multidisciplinary assessment by the healthcare team. Data were collected through an online survey. <br/>Result(s): A total of 867 patients were described. The lack of adequate specialized PPC service emerged, according to the available estimate of specialized PPC needs, as well as the need for improved referral to PPC by pediatricians or territorial services, particularly for infants and oncological patients. More family support measures also seem necessary, particularly for the mothers. Healthcare providers' communication skills should be improved to ensure greater involvement of patients and families in care decisions. <br/>Conclusion(s): This analysis represents the first step toward defining a constantly updated database for the census and monitoring of specialized PPC activities at the national level. This research model can be extended to other realities in different countries, allowing comparison of different care models.<br/>Copyright 2024, Mary Ann Liebert, Inc., publishers.
Rights
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Citation List Month
October List 2024
URL Address
Collection
Citation
Benini F; Mercante A; Di Nunzio S; Papa S; Agosto C; Albanesi B; Amarri S; Avagnina I; Barbugian E; Basile R; Bellagamba O; Bellini F; Beltrami C; Bignamini E; Bolognani M; Campagna M; Carraro C; Catalano G; Catalano I; Celentano L; De Marinis MG; De Tommasi V; De Zen L; Divisic A; Dolcini A; Fasson A; Franchi F; Ghiraldo G; Giacomelli L; Grigolon E; Iadelica A; Lazzarin P; Maghini I; Manfredini L; Marinetto A; Mazzoni E; Michelotto E; Mirone R; Molinaro G; Moliterni P; Moro N; Orofino R; Paone G; Pellegatta F; Peruselli C; Piccolruaz UV; Raspi M; Roverato B; Salata M; Santini A; Schiavon B; Soffritti S; Taucar V; Thaler M; Tornesello A; Uez F; Vaccher S; Vezzoli C; Zanin A; Ziggiotto S, “A Nationwide Study to Evaluate Accessibility to Specialized Pediatric Palliative Care in Italy-Patients, Needs, and Critical Issues: The PalliPed Study,” Pediatric Palliative Care Library, accessed February 10, 2025, https://pedpalascnetlibrary.omeka.net/items/show/19763.