Scaccabarozzi Gianlorenzo, Lovaglio Pietro Giorgio, Limonta Fabrizio, Peruselli Carlo, Bellentani Mariadonata, Crippa Matteo
Department of Frailty, Local social health authority (ASST) Lecco, Local Network of Palliative care, Largo Mandic 1, 23807 Merate, Italy.
Department of Statistics and Quantitative Methods, University Bicocca-Milan, Via Bicocca degli Arcimboldi 8, 20126 Milan, Italy.
Healthcare (Basel). 2019 Jan 2;7(1):4. doi: 10.3390/healthcare7010004.
In Italy, there currently is a lack of reliable and consistent data on home palliative care provided to people near death.
Monitoring the activities of the Italian Home Palliative Care Services, according to the 2014 national data collection program entitled "Observatory of Best Practices in Palliative Care" and providing process/outcome measures on a subsample (Best Practice Panel), on regulatory standards and on complete/reliable activity data.
A data collection web portal using two voluntary internet-based questionnaires in order to retrospectively identify the main care activity data provided within the year 2013 by Home care units. In the Best Practice Panel and International best practices, eligibility and quality measures refer to the national standards of the NL 38/2010. Setting/Subject: Home Palliative Care Services (HPCSs) that provided care from January to December 2013.
118 Home care units were monitored, globally accounting for 40,955 assisted patients within the year 2013 (38,384 cancer patients); 56 (47.5% of 118) were admitted in the Best Practice Panel. Non-cancer (5%) and pediatric (0.4%) patients represented negligible percentages of frail care patients, and a majority of patients died at home (respectively nearly 75% and 80% of cancer and non-cancer patients).
The study demonstrated the feasibility of the collection of certified data from Home care services through a web-based system. Only 80% of the facilities met the requirements provided by the Italian NL 38/2010. Moreover, the extension of the palliative care services provided to frail non-cancer and pediatric patients, affected by complex and advanced chronic conditions, is still inadequate in Italy.
在意大利，目前缺乏关于为临终患者提供的居家姑息治疗的可靠且一致的数据。
根据2014年名为“姑息治疗最佳实践观察站”的国家数据收集计划，监测意大利居家姑息治疗服务的活动，并就一个子样本（最佳实践小组）、监管标准以及完整/可靠的活动数据提供过程/结果指标。
一个数据收集网络门户，使用两份基于互联网的自愿调查问卷，以便回顾性地确定居家护理单位在2013年内提供的主要护理活动数据。在最佳实践小组和国际最佳实践中，资格和质量指标参照NL 38/2010的国家标准。设置/对象：2013年1月至12月提供护理的居家姑息治疗服务（HPCSs）。
监测了118个居家护理单位，2013年全年共护理40955名患者（38384名癌症患者）；56个单位（占118个单位的47.5%）被纳入最佳实践小组。非癌症患者（5%）和儿科患者（0.4%）在脆弱护理患者中所占比例微不足道，大多数患者在家中死亡（癌症患者和非癌症患者分别接近75%和80%）。
该研究证明了通过基于网络的系统从居家护理服务中收集经认证数据的可行性。只有80%的机构符合意大利NL 38/2010规定的要求。此外，在意大利，为受复杂和晚期慢性病影响的脆弱非癌症和儿科患者提供的姑息治疗服务的范围仍然不足。
