Centro Regionale Veneto di Terapia del Dolore and Cure Palliative Pediatriche, Hospice Pediatrico, Padua, Italy.
Department of Surgical Sciences and Integrated Diagnostics, University of Genoa, Genoa, Italy.
J Palliat Med. 2021 Feb;24(2):205-210. doi: 10.1089/jpm.2020.0148. Epub 2020 Jul 8.
Despite their importance, pediatric palliative care (PPC) services are still scantly diffused. In addition, eligibility criteria for PPC are quite complex. Consequently, clinicians require a tool that suggests how to refer patients with life-limiting diseases to the most appropriate service and how to properly allocate health care resources. Recently, the Accertamento dei bisogni Clinico-Assistenziali Complessi in PEDiatria (ACCAPED) scale has been developed by a group of experts in PPC to evaluate the specific clinical needs of pediatric patients with a life-limiting disease. This study presents the validation of the ACCAPED scale. Validation of ACCAPED scale was pursued by means of description and analysis of clinical vignettes representing patients with challenging-to-evaluate needs who have to be referred to the most appropriate service (community care, general PPC, and specialized PPC). The evaluation of vignettes according to the clinical experience of the experts represented the gold standard against which the validity of the ACCAPED scale was tested by groups with different levels of experience (experts, pediatricians, and health care providers (HCPs) not involved in PPC). Results show a very high concordance between the evaluation of the vignettes through the ACCAPED scale and the evaluation by the clinical experience for experts in PPC and pediatricians. A less favorable grade of concordance has been recorded for HCPs not involved in PPC, suggesting that educational efforts to improve basic knowledge of PPC within the medical community are needed. Overall, this study suggests that the ACCAPED scale is a useful tool to improve rationalization of resources and eligibility criteria for PPC.
尽管儿科舒缓治疗(PPC)服务非常重要,但它们的普及程度仍然很低。此外,PPC 的资格标准相当复杂。因此,临床医生需要一种工具,能够建议如何将患有生命有限疾病的患者转介到最合适的服务机构,并如何合理分配医疗资源。最近,一组 PPC 专家开发了一种名为 Accertamento dei bisogni Clinico-Assistenziali Complessi in PEDiatria (ACCAPED) 的量表,用于评估患有生命有限疾病的儿科患者的特定临床需求。本研究介绍了该量表的验证情况。
通过描述和分析具有挑战性的评估需求的临床病例来验证 ACCAPED 量表,这些病例需要转介到最合适的服务机构(社区护理、一般 PPC 和专门的 PPC)。根据专家的临床经验对病例进行评估,作为 ACCAPED 量表有效性的金标准,然后由具有不同经验水平的小组(专家、儿科医生和不参与 PPC 的医疗保健提供者(HCP))进行验证。
结果表明,PPC 专家和儿科医生通过 ACCAPED 量表评估病例的一致性非常高。而不参与 PPC 的 HCP 的一致性评分较低,这表明需要在医疗界开展教育工作,以提高他们对 PPC 的基本知识的了解。
总的来说,这项研究表明,ACCAPED 量表是一种有用的工具,可以提高 PPC 资源的合理化和资格标准。