Abstract
Background: In Italy, there currently is a lack of reliable and consistent data on home palliative care provided to people near death. Objectives: 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. Design: 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. Results: 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). Conclusion: 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.
Highlights
Out of a population of approximately 60.5 million inhabitants, around 613,000 people die each year in Italy, with a lot of women living up to 84.5 years and men up to 79.5 years
In the 2014 call, 118 registered Home Palliative Care Services (HPCSs) enrolled in the study, 66.6% of the 177 HPCSs active across the Italian territory in 2013, as identified by Agenas
According to 2013 official data (Italian Institute of Statistics, ISTAT, Rome, Italy), 72% of Italians live in a province covered by at least one of the 118 HPCSs
Summary
Out of a population of approximately 60.5 million inhabitants, around 613,000 people die each year in Italy, with a lot of women living up to 84.5 years and men up to 79.5 years. Healthcare 2019, 7, 4 national data, it can be estimated that about 250,000–470,000 people are likely to need Palliative Care (PC) in Italy each year. Palliative care incorporates both near death and hospice care (for patients who are terminally ill and with a life expectancy of less than 6 months), and broadens traditional disease models by focusing more on enhancing the quality of life, on optimizing functions and on fostering near death care through decision-making processes and by providing emotional and spiritual support to patients and their families [5]. In Italy, there currently is a lack of reliable and consistent data on home palliative care provided to people near death. 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
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