Abstract：
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. Methods: 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. Results: 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. Conclusions: 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.
摘要：
背景：PalliPed是意大利第一个全国性项目，旨在描述接受专门儿科姑息治疗（PPC）及其家人的患者的特征，在主要护理环境(临终关怀，家庭护理,和医院）。该项目的次要目标是评估区域PPC网络/设施的范围和质量以及专用资源的数量。在这篇文章中,我们介绍了该项目的第一部分的结果。方法：邀请所有意大利PPC中心/设施参与该项目。截至10月24日，由专门的PPC网络/结构照顾的儿童和年轻人，2022年，包括产前护理，参与其中。根据儿科复杂临床需求评估表（ACCAPED量表）和医疗团队进行多学科评估后，评估儿童是否有资格获得专业PPC。数据是通过在线调查收集的。结果：共描述了867例患者。缺乏足够的专业PPC服务，根据对专业PPC需求的现有估计，以及儿科医生或地区服务需要改善向PPC的转诊，特别是婴儿和肿瘤患者。更多的家庭支持措施似乎也是必要的，尤其是对母亲来说。应提高医疗保健提供者的沟通技巧，以确保患者和家庭更多地参与护理决策。结论：这项分析是朝着为在国家一级普查和监测PPC专门活动而不断更新的数据库迈出的第一步。这种研究模式可以扩展到不同国家的其他现实，允许比较不同的护理模式。
