Marisa Martínez-Muñoz

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.

The Catalonia World Health Organization Demonstration Project for Palliative Care Implementation: Quantitative and Qualitative Results at 20 Years

Catalonia (Spain) has a total population of 7.3 million citizens for whom the National Health Service (NHS) provides health care that is free at the point of access. The prevalence of terminally ill patients is between 30,100 and 39,600. Twenty years ago, the World Health Organization (WHO), in collaboration with the Catalan Department of Health and the Catalan Institute of Oncology, began a demonstration project (WHO Demonstration Project) in palliative care (PC) with the aim of implementing specialist PC services, generating experience in this field, identifying areas for improvement, and introducing educative procedures (clinical and nonclinical). Over the past 20 years, 237 PC clinical services (72 home care support teams, 49 hospital support teams, 60 units with 742 dedicated beds, 50 outpatient clinics, and six psychosocial support teams) have been implemented. In the five years since the previous evaluation, 57 new clinical services (15 new hospital support teams, 36 outpatient clinics, and six psychosocial support teams among others) and four nonclinical services (education, research, WHO Collaborating Center, and planning) have been implemented. During the year 2010, a total of 46,200 processes were undertaken for the care of 23,100 patients, of whom 12,100 (52%) had cancer and 11,000 (48%) had other chronic advanced diseases. The overall yearly costs are around €52,568,000, with an overall savings of €69,300,000 (€2275 per patient, net savings to the NHS of €16,732,000). In the last five years, three qualitative evaluations and a benchmarking process have been performed to identify weak points and inequities in care provision among districts. Systematic assessments indicate high cost-effectiveness of care as well as high levels of satisfaction by patients and their relatives, thus reinforcing the principle that access to PC under the auspices of the NHS at the end of life is a basic human right.

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.

How to design and implement palliative care public health programmes: foundation measures. An operational paper by the WHO Collaborating Centre for Public Health Palliative Care Programmes at the Catalan Institute of Oncology

This paper summarises the recommendations of the WHO Collaborating Centre for Palliative Care Public Health Programmes with respect to design and implementation of palliative care national or regional public health palliative care programmes in their initial phases. We describe the elements of a programme (leadership and aims; needs and context assessment; definition of the target patients; general measures in conventional services; specialist services in different settings; sectorised networks; education and training; availability and accessibility of opioids and essential drugs; legislation; standards; budget; valuation and improvement of quality; and evaluation of results and indicators) and the specific recommendations to implement the first steps of each component. Palliative care planning needs to be systematic, inserted in all levels of the healthcare system and adapted to the cultural and organisational status of the system. Coverage for all types of patients in need, together with equity and quality, are the main aims of programmes.

Structure, organisation and clinical outcomes in cancer patients of hospital support teams in Spain

Objectives To describe the structure, characteristics of patients and basic clinical outcomes in cancer patients receiving care from palliative care hospital support teams (HSTs) in Spain. Method A multi-centre observational two phase study. Phase I: A descriptive survey of all HSTs in Spain. Phase II: A quasi-experimental prospective cohort study to describe the clinical outcomes, symptom severity and survival. Results 60 HSTs in Spain met the inclusion criteria. All HSTs were multidisciplinary with wide experience (mean 6.8 years). HSTs coverage was 21.5% of all cancer deaths in Spain. A total number of 364 advanced cancer patients were included in the cohort study; 76% were classified as moderate or high complexity. Overall, 64% were male subjects and the most frequent primary cancer site was lung (26%). Half of the patients had no detailed information about cancer staging and only 19% knew their short-term prognosis. The mean length of intervention was 6.5 days (mean three visits per patient). Outcomes were: 34% deaths during the admission process; 38% were discharged home; and 28% were transferred to another medium-term-stay specialist unit. The main symptoms were pain (68%), dyspnoea (43%), vomiting (24%), anorexia (72%), asthenia (78%), insomnia (50%), anxiety (45%) and depression (35%). After the HSTs intervention, the symptom severity was significantly reduced (p<0.001) for all symptoms, except for weakness and anorexia. The mean survival from inclusion was 111 days. Conclusions Palliative intervention of HSTs is characterised by being adjusted to patient needs and short duration. Their care was focused on the preterminal phase of cancer patients of moderate–high complexity.

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.

Estudio sobre necesidades formativas en cuidados paliativos para atención primaria

Introduccion. La estrategia en cuidados paliativos del Sistema Nacional de Salud del ano 2007 determina establecer programas de formacion continuada especifica para los profesionales del sistema sanitario con el fin de que atiendan adecuadamente las necesidades de los pacientes en situacion de enfermedad avanzada o terminal, y de su familia. Se propone conocer las necesidades en formacion percibidas por los profesionales de atencion primaria en Cataluna relacionadas con cuidados paliativos y sugerir enfoques formativos que impacten en el cuidado de pacientes comunitarios en situacion de enfermedad avanzada. Pacientes y metodos. Se llevo a cabo un estudio observacional, descriptivo, transversal, con metodologia cualitativa y cuantitativa, que incluia: a) encuesta a directores de equipos de atencion primaria, determinando necesidades y prioridades formativas en cuidados paliativos y viabilidad de los planes formativos; y b) grupos focales con profesionales y docentes expertos en cuidados paliativos y profesionales de atencion primaria, identificando similitudes y diferencias en las necesidades de formacion percibidas en cuidados paliativos.