Prognosis of patients with acute lymphoblastic leukaemia relapsing after allogeneic stem cell transplantation.

The outcomes of patients with acute lymphoblastic leukaemia (ALL) presenting relapse after allogeneic stem cell transplant (allo-SCT) are poor, with few data available in this setting. OBJECTIVE AND METHODS: To evaluate the outcomes of patients with ALL presenting relapsed after allo-SCT, we performed a retrospective study including 132 from 11 centres in Spain. RESULTS: Therapeutic strategies consisted of palliative treatment (n = 22), chemotherapy (n = 82), tyrosine kinase inhibitors (n = 26), immunotherapy with inotuzumab and/or blinatumumab (n = 19), donor lymphocyte infusions (n = 29 pts), second allo-SCT (n = 37) and CAR T therapy (n = 14). The probability of overall survival (OS) at 1 and 5 years after relapse was 44% (95% confidence interval [CI]: 36%; 52%) and 19% (95% CI: 11%; 27%). In the 37 patients undergoing a second allo-SCT, the 5-year estimated OS probability was 40% [22%; 58%]. Younger age, recent allo-SCT, late relapse, 1st complete remission at 1st allo-SCT and chronic graft-versus-host disease confirmed their positive impact on survival in the multivariable analysis. CONCLUSION: Despite the poor prognosis of patients with ALL presenting relapse after a first allo-SCT, some can be satisfactorily rescued and a second allo-SCT still remains a valid option for selected patients. Moreover, emerging therapies really might improve ALL patients outcome when relapsing after an allo-SCT.

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.

Outcomes of patients with chronic myelomonocytic leukaemia treated with non-curative therapies: a retrospective cohort study.

BACKGROUND: Approval of hypomethylating agents in patients with chronic myelomonocytic leukaemia is based on trials done in patients with myelodysplastic syndromes. We aimed to investigate whether hypomethylating agents provide a benefit in subgroups of patients with chronic myelomonocytic leukaemia compared with other treatments. METHODS: For this retrospective cohort study, data were retrieved between Nov 30, 2017, and Jan 5, 2019, from 38 centres in the USA and Europe. We included non-selected, consecutive patients diagnosed with chronic myelomonocytic leukaemia, who received chronic myelomonocytic leukaemia-directed therapy. Patients with acute myeloid leukaemia according to 2016 WHO criteria at initial diagnosis (ie, ≥20% blasts in the bone marrow or peripheral blood) or with unavailability of treatment data were excluded. Outcomes assessed included overall survival, time to next treatment, and time to transformation to acute myeloid leukaemia. Analyses were adjusted by age, sex, platelet count, and Chronic myelomonocytic leukaemia-Specific Prognostic Scoring System (CPSS). Patients were grouped by first received treatment with either hydroxyurea, hypomethylating agents, or intensive chemotherapy, and stratified by risk according to blast count, French-American-British subtype, CPSS, WHO 2016 subtype, and the eligibility criteria of the DACOTA trial (NCT02214407). FINDINGS: 949 patients diagnosed with chronic myelomonocytic leukaemia between April 13, 1981, and Oct 26, 2018, were included. Median follow-up was 23·4 months (IQR 11·5-42·3) from diagnosis and 16·2 months (6·6-31·6) from start of first-line treatment. 412 (43%) of 949 patients received hypomethylating agents as first treatment, 391 (41%) hydroxyurea, and 83 (9%) intensive chemotherapy. Adjusted median overall survival for patients treated with hydroxyurea versus hypomethylating agents was 15·6 months (95% CI 13·1-17·3) versus 20·7 months (17·9-23·4); hazard ratio (HR) 1·39 (1·17-1·65; p=0·0002) and 14·0 months (9·8-17·2) versus 20·7 months (17·9-23·4; HR 1·55 [1·16-2·05]; p=0·0027) for those treated with intensive chemotherapy versus hypomethylating agents. In patients with myeloproliferative chronic myelomonocytic leukaemia (myeloproliferative CMML), median overall survival was 12·6 months (10·7-15·0) versus 17·6 months (14·8-21·5; HR 1·38 [1·12-1·70]; p=0·0027) for patients treated with hydroxyurea versus hypomethylating agents, and 12·3 months (8·4-16·6) versus 17·6 months (14·8-21·5; HR 1·44 [1·02-2·03]; p=0·040) for intensive chemotherapy versus hypomethylating agents. Hypomethylating agents did not confer an overall survival advantage for patients classified as having lower-risk disease (ie, myelodysplastic chronic myelomonocytic leukaemia with <10% blasts, CMML-0, or lower-risk CPSS). INTERPRETATION: These data suggest hypomethylating agents as the preferred therapy for patients with higher-risk chronic myelomonocytic leukaemia and those with myeloproliferative CMML. Our findings also suggest that CPSS is a valuable tool to identify patients who are most likely to benefit from hypomethylating agents. Further evidence from prospective cohorts would be desirable. FUNDING: The Austrian Group for Medical Tumor Therapy.

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.

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.

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.

Vivir con la enfermedad pulmonar obstructiva crónica avanzada: el impacto de la disnea en los pacientes y cuidadores / Living with advanced chronic obstructive pulmonary disease: the impact of dyspnoea on patients and caregivers

OBJECTIVO: Conocer las experiencias de pacientes y cuidadores que conviven con la enfermedad pulmonar obstructiva crónica avanzada, el impacto de sus síntomas y las necesidades de atención que generan en su contexto funcional, emocional y social. DISEÑO: Estudio cualitativo. Perspectiva fenomenológica. Recogida de datos durante 2013-2015. EMPLAZAMIENTO: Atención primaria, hospitalaria e intermedia. Osona (Barcelona). PARTICIPANTES Y/O CONTEXTOS: Diez pacientes de atención primaria con enfermedad pulmonar obstructiva crónica avanzada, 10 cuidadores principales respectivos y 19 profesionales de atención primaria, 2 neumólogos, 2 de cuidados paliativos, implicados en su atención y un psicólogo clínico. MÉTODO: Muestreo teórico. Entrevistas semiestructuradas y en profundidad a pacientes, cuidadores y profesionales (47 entrevistas). RESULTADOS: Las temáticas emergentes identificadas en las entrevistas de pacientes y cuidadores hacen referencia a la disnea, síntoma predominante sin un tratamiento efectivo y con un gran impacto en la vida de pacientes y cuidadores. Un síntoma con gran repercusión funcional, emocional y social al que es necesario adaptarse para sobrevivir. CONCLUSIONES: La atención adecuada de los pacientes con enfermedad pulmonar obstructiva crónica, más allá de las medidas farmacológicas para controlar los síntomas respiratorios, pasa por la comprensión del sufrimiento, las pérdidas y las limitaciones que provoca en sus vidas y las de sus cuidadores. Un abordaje paliativo, holístico y cercano a sus vivencias reales, junto al empoderamiento para la adaptación a los síntomas debilitantes, podría contribuir a una vida mejor en la etapa final de la enfermedad

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

[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.

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.

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 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.

Efectividad de la intervención psicosocial en pacientes con enfermedad avanzada y final de vida / No disponible

Objetivos: Demostrar la efectividad de la intervención psicosocial en la atención integral a personas con enfermedades avanzadas. Método: Se ha evaluado la presencia y evolución de parámetros psicológicos y espirituales de 8.964 pacientes, visitados por 117 profesionales de 29 equipos en un estudio de diseño cuasi-experimental, prospectivo, multcéntrico de un solo grupo pre-test post-test. Resultados: Los resultados muestran mejoras significativas en parámetros como ansiedad (RL 657,64; p<0,001), malestar emociona (RL 757,44; p<0,001), sentido de la vida (RL 248,30; p<0,001) y sentimientos de paz y perdón (RL 190,94; p<0,001). Conclusiones: El efecto positivo de la intervención psicosocial en la reducción de los parámetros psicológicos y espirituales evaluados sugiere que esta es eficaz en el contexto de la atención a personas con enfermedades avanzadas (AU)

Objective: To demonstrate the efficacy of psychosocial intervention in the comprehensive care of persons with advanced diseases. Methods: Presence and evolution of psychological and spiritual parameters have been evaluated in 8964 patients, attended by 117 professionals of 29 teams in a near experimental designed, prospective, and multi centric related to a single group pre and post test study. Results: Results show meaningful improvements in parameters such as: anxiety (RL 657.64 p<0.001), emotional distress (RL 757.44; p<0.001), meaning of life (RL 248.30; p<0.001) and peace and forgiveness feelings (RL 190.94; p<0.001). Conclusions: The positive effect of psychosocial intervention in reducing psychological and spiritual evaluated parameters suggests its effectiveness in the care given to people with advanced diseases (AU)

Innovaciones conceptuales e iniciativas de mejora en la atención paliativa del siglo XXI / Conceptual innovations and initiatives to improve palliative care in the XXI century

No disponible

Estudio sobre necesidades formativas en cuidados paliativos para atención primaria / Studying the training needs in palliative care of primary care teams

Introducción. La estrategia en cuidados paliativos del Sistema Nacional de Salud del año 2007 determina establecer programas de formación continuada específica para los profesionales del sistema sanitario con el fin de que atiendan adecuadamente las necesidades de los pacientes en situación de enfermedad avanzada o terminal, y de su familia. Se propone conocer las necesidades en formación percibidas por los profesionales de atención primaria en Cataluña relacionadas con cuidados paliativos y sugerir enfoques formativos que impacten en el cuidado de pacientes comunitarios en situación de enfermedad avanzada. Pacientes y métodos. Se llevó a cabo un estudio observacional, descriptivo, transversal, con metodología cualitativa y cuantitativa, que incluía: a) encuesta a directores de equipos de atención 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 atención primaria, identificando similitudes y diferencias en las necesidades de formación percibidas en cuidados paliativos. Resultados. De la muestra de equipos de atención primaria (48,7% de los existentes), el 52% refiere tener formación básica; el 15%, intermedia, y el 3%, avanzada, con una cobertura global superior al 70% de profesionales de atención primaria. Se percibe la necesidad de formación en cuidados paliativos, que debería generarse sistemáticamente en el marco de programas institucionales, con temas como el control de síntomas, las habilidades comunicativas y la optimización de la coordinación asistencial. Conclusión. Se detecta una baja demanda de formación en habilidades de evaluación, dilemas éticos, planificación de las decisiones anticipadas y manejo del paciente no oncológico, aspectos relevantes en la atención al paciente en situación de enfermedad avanzada (AU)

Introduction. The strategy in palliative care established in 2007 within the National Health Service was that it was necessary to develop continuous training programs specific for health-care professionals with the objective of providing appropriate care for patients with advanced illness and/or end-of-life status, together with their families. The study sought to assess the training needs in palliative care as perceived by the Catalan health-care professionals in primary care; and to suggest training objectives that can have a positive effect on the care of patients with advanced illness within the community. Patients and methods. The study was observational, descriptive and cross-sectional. The qualitative and quantitative methodology included: a) questionnaire involving team leaders in primary care to determine the needs and training priorities in palliative care and the viability of the training schemes; b) focus groups involving health-care professionals and experts in palliative care, and primary care workers, to identify similarities and differences (percieved by the professionals) in the requirements of palliative care training. Results. From the primary care teams sample (48.7% of total), we recorded 52% as having basic training, 15% as intermediate level, and 3% as advanced. The overall coverage was 70% of primary care professionals. The need for training in palliative care is explicitly acknowledged, as is the need for the training to be systematically developed within institutional programs. The requirements worth noting are: follow-up of symptoms, ease of communications, and optimisation of health-care coordination/provision. Conclusion. Other outstanding educational aspects to be necessary included, though not demanded, are: assessment skills, ethical dilemmas or advanced care planning (AU)

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

Fundamento y objetivo: El 75% de las personas en nuestro país morirá a causa de enfermedades crónicas progresivas. La atención a la cronicidad avanzada es uno de los principales retos de los sistemas sanitarios públicos. Este estudio describe la elaboración de un instrumento de identificación de pacientes con enfermedades crónicas avanzadas y pronóstico de vida limitado que pueden requerir algún tipo de intervención paliativa en nuestro entorno sanitario y social. Material y método: Traducción al castellano del PIG/GSF, adaptación cultural y clínica, con identificación de indicadores de severidad y progresión -generales y específicos-; estudio de validez de contenido y pretest. Resultados: El instrumento NECPAL CCOMS-ICO propone una evaluación cuanticualitativa, multifactorial, indicativa y no dicotómica que combina evaluaciones de percepción subjetiva (la pregunta sorpresa) con demanda y necesidades percibidas; parámetros de severidad y progresión, síndromes geriátricos, aspectos emocionales, comorbilidad y uso de recursos; e indicadores específicos para enfermedades seleccionadas. Conclusiones: El instrumento NECPAL CCOMS-ICO , factible y de fácil uso, permitiría identificar a los pacientes crónicos avanzados con necesidades paliativas de toda causa, de manera precoz y en todos los recursos (AU)

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 (AU)

[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.

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.