Determinants of the number of days people in the general population spent at home during end-of-life: Results from a population-based cohort analysis.

BACKGROUND: The number of days spent at home in the last six months of life has been proposed as a comprehensive indicator of high-value patient-centered care; however, information regarding the determinants of this outcome is scarce, particularly among the general population. We investigated the determinants of spending time at home within the six months preceding death. METHODS: Population-based, retrospective analysis of administrative databases of the Catalan government. The analysis included adult (≥18 years) individuals who died in Catalonia (North-east Spain) in 2017 and met the McNamara criteria for palliative care. The primary outcome was the number of days spent at home within the last 180 days of life. Other variables included the cause of death, demographic characteristics, and socioeconomic status, stratified as very low, low, mid, and high level. RESULTS: The analysis included 40,137 individuals (19,510 women; 20,627 men), who spent a median of 140 days (IQR 16-171) at home within the six months preceding death (women 140 [16-171]; men 150 [100-171]). Female gender was an independent factor of staying fewer days at home (OR 0.80 [95% CI 0.77-0.82]; p<0.001). Higher socioeconomic levels were significantly associated with an increasing number of days at home in both genders: among women, ORs of the low, middle, and high levels were 1.09 (0.97-1.22), 1.54 (1.36-1.75), and 2.52 (1.69-3.75) (p<0.001), respectively; the corresponding ORs among men were 1.27 (1.12-1.43), 1.56 (1.38-1.77), 2.82 (2.04-3.88) (p<0.001). The presence of dementia was a strong predictor of spending less time at home in women (0.41 (0.38-0.43); p<0.001) and men (0.45 (0.41-0.48); p<0.001). CONCLUSIONS: Our results suggest that end-of-life care is associated with gender and socioeconomic inequalities; women and individuals with lower socioeconomic status spend less time at home within the last 180 days of life.

Compassionate communities: design and preliminary results of the experience of Vic (Barcelona, Spain) caring city.

BACKGROUND: A program of Compassionate City or Community (CC) has been designed and developed in the City of Vic (43,964 habitants, Barcelona, Spain), based on The Compassionate City Charter and other public health literature and experiments, with the joint leadership of the City Council and the Chair of Palliative Care at the University of Vic, and as an expansion of a comprehensive and integrated system of palliative care. METHODS: The program started with an assessment of needs of the city as identified by 48 social organizations with a foundational workshop and a semi-structured survey. After this assessment, the mission, vision, values and aims were agreed. The main aims consisted in promoting changes in social and cultural attitudes toward the end of life (EoL) and providing integrated care for people with advanced chronic conditions and social needs such as loneliness, poverty, low access to services at home, or conflict. The selected slogan was "Living with meaning, dignity, and support the end of life". RESULTS: The program for the first year has included 19 activities (cultural, training, informative, and mixed) and followed by 1,260 attendants, and the training activities were followed by 147 people. Local and regional sponsors are funding the initiative. After a year, a quantitative and qualitative evaluation was performed, showing high participation and satisfaction of the attendants and organizations. In the second year, the care for particular vulnerable people defined as targets (EoL and social factors described before) will start with volunteers with more organizations to join the project. CONCLUSIONS: The key identified factors for the initial success are: the strong joint leadership between social department of the Council and the University; clear aims and targets; high participation rates; the limited size of the geographical context; which allowed high participation and recognition; and the commitment to evaluate results.

Utility of the NECPAL CCOMS-ICO© tool and the Surprise Question as screening tools for early palliative care and to predict mortality in patients with advanced chronic conditions: A cohort study.

BACKGROUND: The Surprise Question (SQ) identifies patients with palliative care needs. The NECPAL CCOMS-ICO© (NECPAL) tool combines the Surprise Question with additional clinical parameters for a more comprehensive assessment. The capacity of these screening tools to predict mortality is still unknown. AIM: To explore the predictive validity of the NECPAL and SQ to determine 12- to 24-month mortality. DESIGN: Longitudinal, prospective and observational cohort study. SETTING/PARTICIPANTS: Three primary care centres, one general hospital, one intermediate care centre, and four nursing homes. Population cohort with advanced chronic conditions and limited life prognosis. Patients were classified according to SQ and NECPAL criteria and followed for 24 months. RESULTS: Data available to assess 1059 of 1064 recruited patients (99.6%) at 12 and 24 months: 837 patients were SQ+ and 780 were NECPAL+. Mortality rates at 24 months were as follows: 44.6% (SQ+) versus 15.8% (SQ-) and 45.8% (NECPAL+) versus 18.3% (NECPAL-) ( p = 0.000). SQ+ and NECPAL+ identification was significantly correlated with 24-month mortality risk (hazard ratios: 2.719 and 2.398, respectively). Both tools were highly sensitive (91.4, CI: 88.7-94.1 and 87.5, CI: 84.3-90.7) with high negative predictive values (84.2, CI: 79.4-89.0 and 81.7, CI: 77.2-86.2), with low specificity and positive predictive value. The prognostic accuracy of SQ and NECPAL was 52.9% and 55.2%, respectively. The predictive validity was slightly better for NECPAL. CONCLUSION: SQ and NECPAL are valuable screening instruments to identify patients with limited life prognosis who may require palliative care. More research is needed to increase its prognostic utility in combination with other parameters.

Prevalence and characteristics of patients with advanced chronic conditions in need of palliative care in the general population: a cross-sectional study.

BACKGROUND: Of deaths in high-income countries, 75% are caused by progressive advanced chronic conditions. Palliative care needs to be extended from terminal cancer to these patients. However, direct measurement of the prevalence of people in need of palliative care in the population has not been attempted. AIM: Determine, by direct measurement, the prevalence of people in need of palliative care among advanced chronically ill patients in a whole geographic population. DESIGN: Cross-sectional, population-based study. MAIN OUTCOME MEASURE: prevalence of advanced chronically ill patients in need of palliative care according to the NECPAL CCOMS-ICO(©) tool. NECPAL+ patients were considered as in need of palliative care. SETTING/PARTICIPANTS: County of Osona, Catalonia, Spain (156,807 inhabitants, 21.4% > 65 years). Three randomly selected primary care centres (51,595 inhabitants, 32.9% of County's population) and one district general hospital, one social-health centre and four nursing homes serving the patients. Subjects were all patients attending participating settings between November 2010 and October 2011. RESULTS: A total of 785 patients (1.5% of study population) were NECPAL+: mean age = 81.4 years; 61.4% female. Main disease/condition: 31.3% advanced frailty, 23.4% dementia, 12.9% cancer (ratio of cancer/non-cancer = 1/7), 66.8% living at home and 19.7% in nursing home; only 15.5% previously identified as requiring palliative care; general clinical indicators of severity and progression present in 94% of cases. CONCLUSIONS: Direct measurement of prevalence of palliative care needs on a population basis is feasible. Early identification and prevalence determination of these patients is likely to be the cornerstone of palliative care public health policies.

[Identification of people with chronic advanced diseases and need of palliative care in sociosanitary services: elaboration of the NECPAL CCOMS-ICO© tool]. / Identificación de personas con enfermedades crónicas avanzadas y necesidad de atención paliativa en servicios sanitarios y sociales: elaboración del instrumento NECPAL CCOMS-ICO(©)

BACKGROUND AND OBJECTIVE: Around 75% of the population in our country will die as a consequence of chronic advanced diseases. Advanced chronic care is one of the major challenges for public health systems. This study describes the development of a tool to identify patients with advanced chronic diseases and life limited prognosis that might require some type of palliative intervention in our health and social environment. MATERIAL AND METHODS: Spanish translation of PIG/GSF, cultural and clinical adaptation, identification of indicators of severity and progression -general and specific-; study of content validity and pre-test. RESULTS: The NECPAL CCOMS-ICO(©) tool proposes a quantitative-qualitative, multifactorial, indicative and not dichotomous evaluation combining subjective perception assessment (surprise question) with demand and perceived needs; parameters of severity and progression, geriatric syndromes, emotional aspects, comorbidity and use of resources; and indicators for selected pathologies. CONCLUSIONS: The NECPAL CCOMS-ICO(©) tool, feasible and easy to use, would identify patients with advanced chronic palliative needs of any cause, early and in all resources.

Identifying patients with chronic conditions in need of palliative care in the general population: development of the NECPAL tool and preliminary prevalence rates in Catalonia.

Palliative care (PC) has focused on patients with cancer within specialist services. However, around 75% of the population in middle-income and high-income countries die of one or more chronic advanced diseases. Early identification of such patients in need of PC becomes crucial. In this feature article we describe the initial steps of the NECPAL (Necesidades Paliativas [Palliative Needs]) Programme. The focus is on development of the NECPAL tool to identify patients in need of PC; preliminary results of the NECPAL prevalence study, which assessed prevalence of advanced chronically ill patients within the population and all socio-health settings of Osona; and initial implementation of the NECPAL Programme in the region. As first measures of the Programme, we present the NECPAL tool. The main differences from the British reference tools on which NECPAL is based are highlighted. The preliminary results of the prevalence study show that 1.45% of the total population and 7.71% of the population aged over 65 are 'surprise question' positive, while 1.33% and 7.00%, respectively, are NECPAL positive, and surprise question positive with at least one additional positive parameter. More than 50% suffer from geriatric pluri-pathology conditions or dementia. The pilot phase of the Programme consists of developing sectorised policies to improve PC in three districts of Catalonia. The first steps to design and implement a Programme to improve PC for patients with chronic conditions with a public health and population-based approach are to identify these patients and to assess their prevalence in the healthcare system.