Prevalence and clinical characteristics of patients with Advanced Chronic Illness and Palliative Care needs, identified with the NECPAL CCOMS-ICO© Tool at a Tertiary Care Hospital.

BACKGROUND: The identification of patients with advanced chronic conditions and palliative care needs is essential since their care represents one of the main challenges for public health systems. The study aimed to determine the prevalence and characteristics of inpatients with palliative care needs in different services of a tertiary care hospital using the NECPAL CCOMS-ICO© tool. METHODS: A descriptive, cross-sectional cohort study was conducted in a tertiary hospital. The NECPAL tool identifies patients who require palliative care. Any patient with the Surprise Question with the answer "NO" and at least another question of the tool with a positive answer is considered a positive identification. Patients were classified as Non-NECPAL, NECPAL I-II, and NECPAL III, depending on the NECPAL tool criteria they met. The presence of physical symptoms, emotional distress, and social risk factors was assessed. RESULTS: Of the 602 inpatients, 236 (39.2%) were enrolled. Of them, 34 (14.4%) non-NECPAL, 202 (85.6%) NECPAL+ [105 (44.5%) NECPAL I-II, and 97 (41.1%) NECPAL III]. Physical symptom burden was high (pain intensity ≥ 1 in 68.3% of patients; tiredness ≥ 1 in 83.5%; somnolence ≥ 1 in 50.6%; dyspnea ≥ 1 in 37.9%; anorexia ≥ 1 in 59.5%). 64.1% had emotional distress, and 83.6% had social risk factors. The NECPAL-III group contained a higher percentage of cancer patients, higher demand for palliative care, and greater need for palliative care (p < 0.001). In 50.8% of cases, no referrals were made to psychology, social work, or hospital palliative and supportive care teams. The three services with the higher number of patients with palliative care needs were: Palliative Care Unit (100%), Oncology (54.54%), and Emergency Short-stay Unit (54.16%). CONCLUSION: A high percentage of patients admitted to tertiary care hospitals presented palliative care needs, with multiple unmet physical, emotional, and social needs. Less than 50% are referred to specialized care teams, such as hospital palliative and supportive care teams.

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.

[Living with advanced chronic obstructive pulmonary disease: The impact of dyspnoea on patients and caregivers]. / 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.

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.

The "La Caixa" Foundation and WHO Collaborating Center Spanish National Program for enhancing psychosocial and spiritual palliative care for patients with advanced diseases, and their families: preliminary findings.

OBJECTIVE: The psycho-social needs of patients with advanced chronic illness and their families include emotional, spiritual, and bereavement care. With a funding initiative by the La Caixa Foundation and design by the WHO Collaborating Center, we developed and implemented a program for the comprehensive care of terminally-ill individuals and their families, in Spain. The intent was to improve the psycho-social and spiritual dimensions of care, to generate experience and evidence, to explore models, and to act as catalyst in the Spanish National Strategy for Palliative Care. METHOD: We reviewed the process of design, implementation, and initial evaluation of the program at 18 months. RESULTS: Thirty psycho-social teams' (PST) acting as support teams projects were initiated. There were 120 full-time healthcare professionals appointed (58% clinical psychologists). These professionals received training through a comprehensive postgraduate course, and all used the same documentation. Some results were collated 18 months post-implementation. The total number of patients attended to was 10,954, and the number of relatives was 17,715. The preliminary clinical outcomes show a significant improvement in well-being, and a decrease in anxiety and insomnia, although there was a smaller impact on alleviating depression. Healthcare professionals collated results on satisfaction with palliative care (PC) services. SIGNIFICANCE OF RESULTS: Based on these preliminary results, we suggest that the PST can be a model of organization that is effective and efficient in improving the psycho-social and spiritual aspects of care of terminally ill patients. Further follow-up and evaluation with validated tools are the main goals for the immediate future.

Intrahospital Mortality and Survival of Patients with Advanced Chronic Illnesses in a Tertiary Hospital Identified with the NECPAL CCOMS-ICO© Tool.

BACKGROUND: Between 69% and 82% of patients with advanced chronic illness require palliative care (PC). The NECPAL CCOMS-ICO© tool can identify these individuals. Tools to estimate survival are available, but have limited predictive ability, and therefore we sought to assess if NECPAL could improve survival prediction. OBJECTIVE: To describe hospital mortality, survival rates, and related variables in a sample of inpatients identified with the NECPAL tool. DESIGN: Cross-sectional study with longitudinal cohort follow-up. Sociodemographic and clinical data were analyzed. A predictive model (Cox regression analysis) was performed to assess survival. SETTING/SUBJECTS: Patients admitted to a tertiary hospital. Included patients were considered to be especially affected by their chronic condition and NECPAL+ patients (surprise question [SQ]+ plus ≥1 of the tool's other three criteria). Patients were classified into three subgroups: non-NECPAL (either SQ- or not meeting any additional NECPAL criteria); NECPAL I-II (SQ+ with one to two additional criteria); and NECPAL III (SQ+ with all three additional criteria). RESULTS: Of the 602 inpatients, 236 (39.2%) were included. Of these, 49 (20.3%) died during hospitalization: 14 (13.3%) were NECPAL I-II; 34 (35.1%) were NECPAL III; and none were non-NECPAL (p < 0.001). At two years, 146 deaths (61.9%) were observed: 9 (26.5%) non-NECPAL; 57 (54.3%) NECPAL I-II; and 80 (82.5%) NECPAL III (p < 0.001). Median survival was 9.1 months. Variables associated with higher mortality were NECPAL III classification (hazard ratio [HR]: 1.75 [1.19-2.57]); in need of PC (HR: 2 [1.27-3.13]); dysphagia (HR: 1.7 [1.12-2.58] 6); cancer (HR: 3.21 [2.19-4.71]); and age >85 years (HR: 2.52 [1.46-4.35]). At six months, the NECPAL had an area under the curve (AUC) of 0.7 (95% confidence interval [CI]: 0.632-0.765), and at 24 months, the NECPAL AUC was 0.717 (95% CI: 0.650-0.785). CONCLUSIONS: The NECPAL CCOMS-ICO© tool can improve the prediction of mortality. The presence of all three NECPAL criteria (NECPAL III) increases the tool's predictive ability.

Ethical Challenges of Early Identification of Advanced Chronic Patients in Need of Palliative Care: The Catalan Experience.

Palliative care must be early applied to all types of advanced chronic and life limited prognosis patients, present in all health and social services. Patients' early identification and registry allows introducing palliative care gradually concomitant with other measures. Patients undergo a systematic and integrated care process, meant to improve their life quality, which includes multidimensional assessment of their needs, recognition of their values and preferences for advance care planning purposes, treatments review, family care, and case management. Leaded by the National Department of Health, a program for the early identification of these patients has been implemented in Catalonia (Spain). Although the overall benefits expected, the program has raised some ethical issues. In order to address these challenges, diverse institutions, including bioethics and ethics committees, have elaborated a proposal for the program's advantages. This paper describes the process of evaluation, elaboration of recommendations, and actions done in Catalonia.

The Catalonia WHO Demonstration Project of Palliative Care: Results at 25 Years (1990-2015).

In 2015, the World Health Organization (WHO) Demonstration Project on Palliative Care in Catalonia (Spain) celebrated its 25th anniversary. The present report describes the achievements and progress made through this project. Numerous innovations have been made with regard to the palliative care (PC) model, organization, and policy. As the concept of PC has expanded to include individuals with advanced chronic conditions, new needs in diverse domains have been identified. The WHO resolution on "Strengthening of palliative care as a component of comprehensive care throughout the life course," together with other related WHO initiatives, support the development of a person-centered integrated care PC model with universal coverage. The Catalan Department of Health, together with key institutions, developed a new program in the year 2011 to promote comprehensive and integrated PC approach strategies for individuals with advanced chronic conditions. The program included epidemiologic research to describe the population with progressive and life-limiting illnesses. One key outcome was the development of a specific tool (NECPAL CCOMS-ICO(©)) to identify individuals in the community in need of PC. Other innovations to emerge from this project to improve PC provision include the development of the essential needs approach and integrated models across care settings. Several educational and research programs have been undertaken to complement the process. These results illustrate how a PC program can respond and adapt to emerging needs and demands. The success of the PC approach described here supports more widespread adoption by other key care programs, particularly chronic care programs.

The WHO collaborating centre for public health palliative care programs: an innovative approach of palliative care development.

BACKGROUND: The designation of the Catalan Institute of Oncology (Barcelona, Spain) as World Health Organization (WHO) Collaborating Centre for Public Health Palliative Care Programmes (WHOCC-ICO) in February 2008 turns the institution into the first ever center of international reference in regards to palliative care implementation from a public health perspective. The center aims to provide support to countries willing to develop palliative care programs, to identify models of success, to support WHO's policies, and to generate and spread evidence on palliative care. OBJECTIVE: This article describes the WHOCC-ICO's contribution in the implementation of public health palliative care programs and services. The center's main features and future actions are emphasized. RESULTS: At the end of the initial four-year designation period, the organization evaluates the task done to reach its objectives. Such global assessment would take forward the quality of the institution, and generate a revision of its terms of reference for the next designation period. CONCLUSIONS: Based on new evidence, the center has recently decided to expand its scope by adopting a community-wide chronic care approach which moves beyond cancer and focuses on the early identification of patients with any chronic disease in need of palliative care. Moreover, the center advocates the development of comprehensive models of care that address patients' psychosocial needs. This center's new work plan includes additional significant innovations, such as the startup of the first chair of palliative care in Spain. Such a whole new approach responds to the main challenges of current palliative care.

[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.

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.

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.

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.

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

PURPOSE OF REVIEW: We 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 FINDINGS: The 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. SUMMARY: The 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.