Predicting 60-Day Mortality in a Home-Care Service: Development of a New Inter-RAI 49-Frailty Index in Patients with Chronic Disease and without a Cancer Diagnosis.

OBJECTIVE: Frailty Index (FI) is used to define the level of frailty in various clinical settings. Fifteen- and 26-item FIs have been demonstrated to predict 1-year mortality and intensity of care in home care (HC) and palliative home care (PHC). The objective of this study was to develop a new FI to predict the 60-day risk of death or transition to a PHC service after the initiation of an HC service in patients with chronic disease and without a cancer diagnosis. DESIGN: Retrospective cohort study. SETTING AND PARTICIPANTS: Patients 18 years and older followed in an HC service of a "Frailty Department-Local Palliative Care Network" from January 1, 2017, to October 31, 2021. METHODS: A 49-item FI (FI-49) was developed selecting variables within the standardized international Residential Assessment Instrument assessments (interRAI-HC) and compared to existing FIs with 15 and 26 variables. RESULTS: A total of 2099 patients were included in the study with a median age of 80.0 years (IQR: 72.0-86.0) and a predominantly female population (62.4%). Among these patients, 8% died or were transferred to PHC within the 60-day follow-up. The FI-49 demonstrated a higher ability to predict 60-day mortality (C index 0.8165, 95% CI 0.7848-0.8481) compared to the 26- and 15-item FI. An FI-49 cutoff of 0.33 was also selected to provide clinicians with a more practical approach (C-index of 0.7044, 95% CI 0.6796-0.7292). CONCLUSION AND IMPLICATION: The FI-49 is a good predictor of short-term mortality or transition to palliative care among older patients referred to an HC service. The automatic calculation of this tool could facilitate more appropriate care planning and the correct allocation of healthcare resources, especially considering the rapid ageing of the population.

Assessing the Costs of Home Palliative Care in Italy: Results for a Demetra Multicentre Study.

BACKGROUND: The sustainability of palliative care services is nowadays crucial inasmuch as resources for palliative care are internationally scarce, the funding environment is competitive, and the potential population is growing. METHODS: The DEMETRA study is a multicentre prospective observational study, describing the intensity of care and the related costs of palliative home care pathways. RESULTS: 475 patients were enrolled as recipients of specialized palliative home care. The majority of recipients were cancer patients (89.4%). The mean duration of palliative care pathways was 46.6 days and mean home care intensity coefficient equal to 0.6. The average daily cost of the model with the reference variables is 96.26 euros. Factors statistically significantly associated with an increase in mean daily costs were greater dependence and extreme frailty (p < 0.05). Otherwise, a longer duration of treatment course was associated with a significant decrease in mean daily costs (p < 0.001). CONCLUSIONS: In terms of clinical and organizational management, considering the close association with the intensity and cost of the path, frailty should be systematically assessed by all facilities that potentially refer patients to home palliative care teams, and it should be carefully recorded in a standardized payment rate perspective.

The Relationship between Practitioners and Caregivers during a Treatment of Palliative Care: A Grounded Theory of a Challenging Collaborative Process.

The possibility of coming to a "good death" is a challenging issue that crosses ethical and religious beliefs, cultural assumptions, as well as medical expertise. The provision of palliative care for relieving patients' pain is a practice that reshapes the path to the event of death and gives form to a particular context of awareness, recalling the notion proposed by Glaser and Strauss. This decision redesigns the relationships between patients, practitioners and caregivers and introduces a new pattern of collaboration between them. Our study focuses on the implications of the collaboration between practitioners and caregivers, starting from the assumption that the latter may provide support to their loved ones and to the practitioners, but need to be supported too. We provide a qualitative analysis of this collaboration based on an empirical research that took place in four different settings of provision of palliative care, reporting the contrast between the affective engagement of caregivers and the professional approach of practitioners. We claim that this ambivalent collaboration, while embedded in contingent and incommensurable experiences, brings to the fore the broader understanding of the path to a "good death," outlining its societal representation as a collective challenge.

An estimation of the number of children requiring pediatric palliative care in Italy.

BACKGROUND: Pediatric palliative care (PPC) addresses the physical and psychological needs of children suffering from life-limiting diseases. To define prevention and educational plans and to properly allocate resources, a precise estimation of the PPC burden is required. OBJECTIVES: To estimate the current number of children requiring PPC in Italy, useful to assist policy-makers and healthcare bodies in the organization and allocation of PPC resources. METHODS: Literature data, The Global Atlas of Palliative Care at the End of Life and Italian national databases have been consulted. RESULTS: According to our estimation, at present, a total of 20,540-32,864 children in Italy require PPC (34-54 children/100,000 inhabitants) of whom 18 children/100,000 inhabitants require specialized PPC. CONCLUSIONS: The present work is a fundamental tool to be used by the institutions, the local networks of PPC and the health programmers when formulating organizational models and care plans consistent with the actual need for PPC.

Impact of Palliative Care in Evaluating and Relieving Symptoms in Patients with Advanced Cancer. Results from the DEMETRA Study.

Background: Cancer patients experience multiple symptoms throughout the course of the disease. We aimed to provide a comprehensive analysis of the symptom burden in patients with advanced cancer at admission to specialist palliative care (PC) services and seven days later to estimate the immediate impact of PC intervention. Patient and methods: The analysis was based on an observational, prospective, multicenter study (named DEMETRA) conducted in Italy on new patients accessing network specialist PC centers during the period May 2017-November 2017. The prevalence and intensity of symptoms were assessed at baseline and after seven days using three tools including the Edmonton Symptom Assessment System (ESAS). Results: Five PC centers recruited 865 cancer patients. Thirty-three different symptoms were observed at the baseline, the most frequent being asthenia (84.9%) and poor well-being (71%). The intensity of the most frequent symptoms according to ESAS ranged from 5.5 for asthenia to 3.9 for nausea. The presence and intensity of physical symptoms increased with increasing levels of anxiety and depression. After seven days, prevalence of nausea and breathlessness as well as intensity of almost all symptoms significantly decreased. Conclusions: The study confirmed the considerable symptom burden of patients with advanced cancer. PC intervention has significantly reduced the severity of symptoms, despite the patients' advanced disease and short survival.

COVID-19 emergency and palliative medicine: an intervention model'.

OBJECTIVES: The aim of this work is to describe the multidisciplinary model of intervention applied and the characteristics of some COVID-19 patients assisted by the hospital palliative care unit (UCP-H) of an Italian hospital in Lombardy, the Italian region most affected by the COVID-19 pandemic. METHODS: A retrospective study was conducted on patients admitted to the A. Manzoni Hospital (Lecco, Lombardy Region, Italy) and referred to the UCP-H between 11 March 2020 and 18 April 2020, the period of maximum spread of COVID-19 in this area. Data were collected on the type of hospitalisation, triage process, modality of palliative care and psychological support provided. RESULTS: 146 COVID-10 patients were referred to the UCP-H. Of these, 120 died during the observation time (82%) while 15 (10.2%) improved and were discharged from the UCP-H care. 93 had less favourable characteristics (rapid deterioration of respiratory function, old age, multiple comorbidities) and an intensive clinical approach was considered contraindicated, while 48 patients had more favourable presentations. Mean follow-up was 4.8 days. A mean of 4.3 assessments per patient were performed. As to respiratory support, 94 patients were treated with oxygen only (at different volumes) and 45 with Continuous Positive Airway Pressure (CPAP). CONCLUSION: The ongoing pandemic highlighted the need for dedicated palliative care teams and units for dying patients. This work highlights how palliative medicine specialist can make a fundamental contribution thanks to their ability and work experience in an organised multiprofessional context.

Clinical Care Conditions and Needs of Palliative Care Patients from Five Italian Regions: Preliminary Data of the DEMETRA Project.

In order to plan the right palliative care for patients and their families, it is essential to have detailed information about patients' needs. To gain insight into these needs, we analyzed five Italian local palliative care networks and assessed the clinical care conditions of patients facing the complexities of advanced and chronic disease. A longitudinal, observational, noninterventional study was carried out in five Italian regions from May 2017 to November 2018. Patients who accessed the palliative care networks were monitored for 12 months. Sociodemographic, clinical, and symptom information was collected with several tools, including the Necesidades Paliativas CCOMS-ICO (NECPAL) tool, the Edmonton Symptom Assessment System (ESAS), and interRAI Palliative Care (interRAI-PC). There were 1013 patients in the study. The majority (51.7%) were recruited at home palliative care units. Cancer was the most frequent diagnosis (85.4%), and most patients had at least one comorbidity (58.8%). Cancer patients reported emotional stress with severe symptoms (38.7% vs. 24.3% in noncancer patients; p = 0.001) and were less likely to have clinical frailty (13.3% vs. 43.9%; p < 0.001). Our study confirms that many patients face the last few months of life with comorbidities or extreme frailty. This study contributes to increasing the general knowledge on palliative care needs in a high-income country.

Predicting care intensity in geriatric home care patients: a comparison of different measures.

BACKGROUND: Dependency in older ages is increasing. Many older persons receive care while living in the community. We aimed to identify the predictive value of four clinical measurements to predict home care intensity in older patients following discharge from hospital to home care over 90 days. METHODS: We included 425 inpatients from the "Frailty Department-Local Palliative Care Network" of the local social health authority (ASST) Lecco, Italy (mean age 75.4 years, SD 14.5; female 75.5%). Changes in Health, End-stage disease, and Signs and Symptoms, light version (CHESS-Lite), activities of daily living (ADL), frailty, and the Service Urgency Algorithm. Receiver operative curves were used to calculate the area under the curve (AUC) for predicting Home Care Intensity coefficient (ratio of the number of days when any home care was provided 90 days post-discharge). The interRAI Contact Assessment Instrument was used to calculate these measures. RESULTS: Analysis was stratified using six different home care intensity score cut-offs. CHESS-Lite had a higher AUC for predicting home care intensity at all cut-off levels but was best for predicting the highest level of home care intensity (≥ 0.8) where the AUC was 0.71 (0.64-0.79). The frailty index also had an acceptable AUC. ADL had the lowest AUC. CONCLUSIONS: Health instability measured with CHESS-Lite has a high predictive value for identifying home care intensity in geriatric patients after discharge from hospital to home, especially in persons with higher home care intensity scores. Geriatric patients with high health instability should be focused on at discharge to prioritize assessment and initiate timely services for home care support.

Monitoring the Italian Home Palliative Care Services.

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.

The "ARIANNA" Project: An Observational Study on a Model of Early Identification of Patients with Palliative Care Needs through the Integration between Primary Care and Italian Home Palliative Care Units.

OBJECTIVE: The aim of this study was to illustrate the characteristics of patients with palliative care (PC) needs, early identified by general practitioners (GPs), and to analyze their care process in home PC services. BACKGROUND: Early identification and service integration are key components to providing quality palliative care (PC) services ensuring the best possible service for patients and their families. However, in Italy, PC is often provided only in the last phase of life and for oncological patients, with a fragmented service. METHODS: Multicenter prospective observational study, lasting in total 18 months, implemented in a sample of Italian Home Palliative Care Units (HPCUs), enrolling and monitoring patients with limited life expectancy, early identified by 94 GPs. The study began on March 1, 2014 and ended on August 31, 2015. RESULTS: Nine hundred thirty-seven patients, out of a total pool of 139,071, were identified by GPs as having a low life expectancy and PC needs. Of these, 556 (59.3%) were nononcological patients. The GPs sent 433 patients to the HPCUs for multidimensional assessment, and 328 (75.8%) were placed in the care of both settings (basic or specialist). For all patients included in the study, both oncological and nononcological patients, there was a high rate of death at home, around 70%. DISCUSSION: This study highlights how a model based on early identification, multidimensional evaluation, and integration of services can promote adequate PC, also for noncancer patients, with a population-based approach.

Quality assessment of palliative home care in Italy.

RATIONALE: The complexity of end-of-life care, represented by a large number of units caring for dying patients, of different types of organizations motivates the importance of measure the quality of provided care. Despite the law 38/2010 promulgated to remove the barriers and provide affordable access to palliative care, measurement, and monitoring of processes of home care providers in Italy has not been attempted. AIMS AND OBJECTIVES: Using data drawn by an institutional voluntary observatory established in Italy in 2013, collecting home palliative care units caring for people between January and December 2013, we assess the degree to which Italian home palliative care teams endorse a set of standards required by the 38/2010 law and best practices as emerged from the literature. METHODS: The evaluation strategy is based on Rasch analysis, allowing to objectively measuring both performances of facilities and quality indicators' difficulty on the same metric, using 14 quality indicators identified by the observatory's steering committee. RESULTS: Globally, 195 home care teams were registered in the observatory reporting globally 40 955 cured patients in 2013 representing 66% of the population of home palliative care units active in Italy in 2013. Rasch analysis identifies 5 indicators ("interview" with caregivers, continuous training provided to medical and nursing staff, provision of specialized multidisciplinary interventions, psychological support to the patient and family, and drug supply at home) easy to endorse by health care providers and 3 problematic indicators (presence of a formally established Local Network of Palliative care in the area of reference, provision of the care for most problematic patient requiring high intensity of the care, and the percentage of cancer patient dying at Home). CONCLUSIONS: The lack of Local Network of Palliative care, required by law 38/2010, is, at the present, the main barrier to its application. However, the adopted methodology suggests that a clear roadmap for health facilities to afford future quality and normative challenges.

Survey of Italian general practitioners: knowledge, opinions, and activities of palliative care.

CONTEXT: General practitioners (GPs) play a key role in the end-of-life care of patients; however, currently in Italy, there are no national population-based studies available of the knowledge and activities of GPs in palliative care. OBJECTIVES: This survey aimed to investigate the knowledge, opinions, and activities of Italian GPs regarding palliative care. METHODS: A telephone survey of 1690 GPs was performed. Information was gathered through an ad hoc questionnaire. RESULTS: Valid interviews were obtained for 88% of the sampled GPs (n=1489). Regarding knowledge, 25% of GPs recognized a correct definition of palliative care, 41% the objectives of palliative care, 66% that palliative care should be provided by a multiprofessional team including GPs, and 60% that in-home care for patients at the end of life requires an individual plan care. Furthermore, 92% of them reported that "there is no maximum daily morphine dose for the management of pain." Regarding opinions, most of the GPs strongly agreed that for patients at the end of life, the GPs' duties included availability during working hours to break bad news to patients and families and to collaborate with the multiprofessional team in establishing an individual care plan. Finally, regarding activities, most GPs reported that, in their daily practice with patients at the end of life, they discontinue the drugs that are not beneficial to symptom management and seek advice from palliative care physicians when symptom management is ineffective. CONCLUSION: This survey reveals the uncertainty of GPs regarding many theoretical issues but a strong willingness to integrate with the multiprofessional palliative care team. To further enhance the skills of GPs and facilitate the collaboration with palliative care services, it might be useful to realize ad hoc training schemes tailored to the different organizational procedures of in-home palliative care services.