Carles Blay

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.

Identifying needs and improving palliative care of chronically ill patients: a community-oriented, population-based, public-health approach

Purpose of reviewWe describe conceptual innovations in palliative care epidemiology and the methods to identify patients in need of palliative care, in all settings.In middle–high-income countries, more than 75% of the population will die from chronic progressive diseases. Around 1.2–1.4% of such populations suffer from chronic advanced conditions, with limited life expectancy. Clinical status deteriorates progressively with frequent crises of needs, high social impact, and high use of costly healthcare resources. Recent findingsThe innovative concept of patients with advanced chronic diseases and limited life prognosis has been addressed recently, and several methods to identify them have been developed. SummaryThe challenges are to promote early and shared interventions, extended to all patients in need, in all settings of the social care and healthcare systems; to design and develop Palliative Care Programmes with a Public Health perspective. The first action is to identify, using the appropriate tools early in the clinical evolution of the disease, all patients in need of palliative care in all settings of care, especially in primary care services, nursing homes, and healthcare services responsible for care provision for these patients; to promote appropriate care in patients with advanced diseases with prognosis of poor survival.

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.

Identifying patients with advanced chronic conditions for a progressive palliative care approach: a cross-sectional study of prognostic indicators related to end-of-life trajectories

Objectives 2 innovative concepts have lately been developed to radically improve the care of patients with advanced chronic conditions (PACC): early identification of palliative care (PC) needs and the 3 end-of-life trajectories in chronic illnesses (acute, intermittent and gradual dwindling). It is not clear (1) what indicators work best for this early identification and (2) if specific clinical indicators exist for each of these trajectories. The objectives of this study are to explore these 2 issues. Setting 3 primary care services, an acute care hospital, an intermediate care centre and 4 nursing homes in a mixed urban–rural district in Barcelona, Spain. Participants 782 patients (61.5% women) with a positive NECPAL CCOMS-ICO test, indicating they might benefit from a PC approach. Outcome measures The characteristics and distribution of the indicators of the NECPAL CCOMS-ICO tool are analysed with respect to the 3 trajectories and have been arranged by domain (functional, nutritional and cognitive status, emotional problems, geriatric syndromes, social vulnerability and others) and according to their static (severity) and dynamic (progression) properties. Results The common indicators associated with early end-of-life identification are functional (44.3%) and nutritional (30.7%) progression, emotional distress (21.9%) and geriatric syndromes (15.7% delirium, 11.2% falls). The rest of the indicators showed differences in the associations per illness trajectories (p<0.05). 48.2% of the total cohort was identified as advanced frailty patients with no advanced disease criteria. Conclusions Dynamic indicators are present in the 3 trajectories and are especially useful to identify PACC for a progressive PC approach purpose. Most of the other indicators are typically associated with a specific trajectory. These findings can help clinicians improve the identification of patients for a palliative approach.

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.

Comprehensive and Integrated Palliative Care for People With Advanced Chronic Conditions: An Update From Several European Initiatives and Recommendations for Policy

The number of people in their last years of life with advanced chronic conditions, palliative care needs, and limited life prognosis due to different causes including multi-morbidity, organ failure, frailty, dementia, and cancer is rising. Such people represent more than 1% of the population. They are present in all care settings, cause around 75% of mortality, and may account for up to one-third of total national health system spend. The response to their needs is usually late and largely based around institutional palliative care focused on cancer. There is a great need to identify these patients and integrate an early palliative approach according to their individual needs in all settings, as suggested by the World Health Organization. Several tools have recently been developed in different European regions to identify patients with chronic conditions who might benefit from palliative care. Similarly, several models of integrated palliative care have been developed, some with a public health approach to promote access to all in need. We describe the characteristics of these initiatives and suggest how to develop a comprehensive and integrated palliative approach in primary and hospital care and to design public health and community-oriented practices to assess and respond to the needs in the whole population. Additionally, we report ethical challenges and prognostic issues raised and emphasize the need for research to test the various tools and models to generate evidence about the benefits of these approaches to patients, their families, and to the health system.

Vivir con la enfermedad pulmonar obstructiva crónica avanzada: el impacto de la disnea en los pacientes y cuidadores

AIM To understand the experiences of patients and caregivers living with advanced chronic obstructive pulmonary disease, the impact of their symptoms and care needs arising from a functional, emotional, and social context. DESIGN Qualitative study. Phenomenological perspective. Data were collected during 2013-2015. SETTING Primary, secondary and intermediate care. Osona (Barcelona). PARTICIPANTS The study included 10 Primary Care patients with advanced chronic obstructive pulmonary disease, their respective 10 caregivers, and 19 primary care professionals, as well as 2 lung specialists, 2 palliative care professionals involved in their care, and one clinical psychologist. METHOD Theoretical sampling. Semi-structured and in-depth interviews with patients, caregivers, and professionals (47 interviews). RESULTS The emergent topics identified in patients and caregivers interviews refer to dyspnoea, the predominant symptom without effective treatment and with a major impact on patients and caregivers lives. A symptom with great functional, emotional and social repercussions to which they need to adapt in order to survive. CONCLUSIONS Beyond pharmacological measures to control respiratory symptoms, proper care of patients with chronic obstructive pulmonary disease, requires understanding of suffering, the losses and limitations that it causes in their lives and those of their caregivers. A palliative, holistic and closer approach to their real experiences, together with an empowerment to adapt to debilitating symptoms, could contribute to a better life in the end-stages of the disease.

Cada semana cuenta: uso de dispositivos sanitarios y costes relacionados de una cohorte comunitaria de personas con enfermedades crónicas avanzadas

Resumen Objetivo Describir el uso de dispositivos sanitarios de las personas con cronicidad avanzada, cuantificando y caracterizando el coste de dicho consumo para sugerir mejoras en los modelos de atención. Diseño Estudio observacional, analítico y prospectivo durante 3 años de una cohorte de personas con cronicidad avanzada. Emplazamiento Tres equipos de atención primaria (EAP) de Osona, Cataluña. Participantes Un total de 224 personas identificadas como enfermos avanzados mediante una estrategia poblacional sistemática. Mediciones principales Edad, sexo, tipo de domicilio, trayectoria final de vida; uso, tipo y coste de los recursos en atención primaria, urgencias, por equipos de paliativos o de hospitalización (en agudos o atención intermedia). Resultados Se realizaron una media de 1,1 ingresos al año (estancia media = 6 días), el 74% en hospitales de atención intermedia. El 93,4% del tiempo los pacientes vivieron en la comunidad, realizando un contacto semanal con el EAP (45,1% en domicilio). El coste medio diario fue 19,4 euros, siendo los principales capítulos la hospitalización de atención intermedia (36,5%), la actividad EAP (29,4%) y los ingresos en agudos (28,6%). Los determinantes de menor coste serían la trayectoria fragilidad/demencia (p < 0,001), vivir en una residencia (p < 0,001) y el sobreenvejecimiento (p < 0,001). Hay ciertas diferencias en el comportamiento de los EAP en el coste global y en recursos comunitarios (p < 0,05). Conclusiones Los consumos en hospitalización intermedia y atención primaria son más relevantes que las estancias en centros de agudos. Los contextos residencial y domiciliario son importantes para atender con efectividad y eficiencia, especialmente cuando los EAP se preparan para ello.