New embracing approach for better advanced cancer patient comprehensive care / Nuevo enfoque para mejorar el cuidado integral del paciente con cáncer avanzado

Abstract Introduction: Cancer patients have multiple and complex needs. Argentina has a medium-high cancer in cidence. Only 14% of patients with palliative care needs have access to specialized services. This study aimed to develop and implement an integrated cancer care model in three hospitals and at home based care level. Methods: The NECPAL2 was a prospective longitudi nal observational study. We report a two-year health care intervention and its implementation process. The NECPAL tool was used as a screening instrument. Adult cancer patients were recruited and assessed. NECPAL+ patients are those with a positive surprise question - Would you be surprised if this patient dies in the next year? (no)- and, at least one indicator of advanced disease. Patients were reassessed periodically with validated scales. Feedback was given for clinical case management. The project was developed in three consecutive stages and six phases. Data were collected for statistical analysis with a prognosis and palliative approach. Results: 2104 cancer patients screened. 681 were NECPAL+. 21% of them presented more than six pa rameters of severity or progression. The mean general survival was 8 months. 61.9% died within the follow-up period. Survival predictors were identified. Over 65% of patients were referred to palliative care; 10% received home-care. Areas for improvement were recognized. An implementation document was created. Discussion: This study showed that a predictive model is feasible, improving chances for timely referral and needs approach. It provided the basis for further implementation research and should encourage policy makers for embracing palliative model development for better cancer patient care.

Resumen Introducción: Los pacientes con cáncer tienen necesi dades múltiples y complejas que se deben atender opor tunamente en los distintos niveles del sistema sanitario. Argentina tiene una incidencia de cáncer media-alta pero solo el 14% de los pacientes acceden a cuidados paliativos. El objetivo de este estudio fue desarrollar e implementar un modelo multicéntrico de atención integral del paciente con cáncer avanzado. Métodos: El NECPAL2 fue un estudio observacional longitudinal prospectivo de dos años. Se evaluaron pacientes adultos con cáncer avanzado. Se utilizó la herramienta NECPAL como instrumento de cribado. Los pacientes NECPAL+ son aquellos con la pregunta sorpre sa positiva -¿Le sorprendería que este paciente muriera en el próximo año? (no)- y, al menos, un indicador de enfermedad avanzada. Los pacientes fueron reevaluados periódicamente con escalas validadas para la gestión clínica de casos. El proyecto se desarrolló en tres etapas consecutivas y seis fases. Se analizaron los resultados con un enfoque pronóstico y paliativo. Resultados: Se identificaron 2104 pacientes oncológicos, 681 eran NECPAL+. El 21% presentaba más de seis paráme tros de gravedad o progresión. Más del 60% de los pacientes NECPAL+ tenían una evaluación inicial multidimensional completa y documentada. La supervivencia media general fue de 8 meses. El 61.9% falleció durante el periodo de seguimiento. Se identificaron predictores de supervivencia. Más del 65% fueron derivados a cuidados paliativos; el 10% recibió atención domiciliaria. Se reconocieron áreas de mejora. Se creó un documento de recomendaciones. Discusión: Este estudio demostró que un modelo predictivo multicéntrico y en varios niveles es factible y mejora las posibilidades de derivación oportuna para atención paliativa. A pesar de las limitaciones este es tudio puede inspirar políticas para mejorar la atención integral de pacientes con cáncer avanzado.

New embracing approach for better advanced cancer patient comprehensive care.

INTRODUCTION: Cancer patients have multiple and complex needs. Argentina has a medium-high cancer incidence. Only 14% of patients with palliative care needs have access to specialized services. This study aimed to develop and implement an integrated cancer care model in three hospitals and at home based care level. METHODS: The NECPAL2 was a prospective longitudinal observational study. We report a two-year healthcare intervention and its implementation process. The NECPAL tool was used as a screening instrument. Adult cancer patients were recruited and assessed. NECPAL+ patients are those with a positive surprise question - Would you be surprised if this patient dies in the next year? (no)- and, at least one indicator of advanced disease. Patients were reassessed periodically with validated scales. Feedback was given for clinical case management. The project was developed in three consecutive stages and six phases. Data were collected for statistical analysis with a prognosis and palliative approach. RESULTS: 2104 cancer patients screened. 681 were NECPAL+. 21% of them presented more than six parameters of severity or progression. The mean general survival was 8 months. 61.9% died within the follow-up period. Survival predictors were identified. Over 65% of patients were referred to palliative care; 10% received home-care. Areas for improvement were recognized. An implementation document was created. DISCUSSION: This study showed that a predictive model is feasible, improving chances for timely referral and needs approach. It provided the basis for further implementation research and should encourage policymakers for embracing palliative model development for better cancer patient care.

Introducción: Los pacientes con cáncer tienen necesidades múltiples y complejas que se deben atender oportunamente en los distintos niveles del sistema sanitario. Argentina tiene una incidencia de cáncer media-alta pero solo el 14% de los pacientes acceden a cuidados paliativos. El objetivo de este estudio fue desarrollar e implementar un modelo multicéntrico de atención integral del paciente con cáncer avanzado. Métodos: El NECPAL2 fue un estudio observacional longitudinal prospectivo de dos años. Se evaluaron pacientes adultos con cáncer avanzado. Se utilizó la herramienta NECPAL como instrumento de cribado. Los pacientes NECPAL+ son aquellos con la pregunta sorpresa positiva - ¿Le sorprendería que este paciente muriera en el próximo año? (no)- y, al menos, un indicador de enfermedad avanzada. Los pacientes fueron reevaluados periódicamente con escalas validadas para la gestión clínica de casos. El proyecto se desarrolló en tres etapas consecutivas y seis fases. Se analizaron los resultados con un enfoque pronóstico y paliativo. Resultados: Se identificaron 2104 pacientes oncológicos, 681 eran NECPAL+. El 21% presentaba más de seis parámetros de gravedad o progresión. Más del 60% de los pacientes NECPAL+ tenían una evaluación inicial multidimensional completa y documentada. La supervivencia media general fue de 8 meses. El 61.9% falleció durante el periodo de seguimiento. Se identificaron predictores de supervivencia. Más del 65% fueron derivados a cuidados paliativos; el 10% recibió atención domiciliaria. Se reconocieron áreas de mejora. Se creó un documento de recomendaciones. Discusión: Este estudio demostró que un modelo predictivo multicéntrico y en varios niveles es factible y mejora las posibilidades de derivación oportuna para atención paliativa. A pesar de las limitaciones este estudio puede inspirar políticas para mejorar la atención integral de pacientes con cáncer avanzado.

How to Advance Palliative Care Research in South America? Findings From a Delphi Study.

CONTEXT: Progress in palliative care (PC) necessarily involves scientific development. However, research conducted in South America (SA) needs to be improved. OBJECTIVES: To develop a set of recommendations to advance PC research in SA. METHODS: Eighteen international PC experts participated in a Delphi study. In round one, items were developed (open-ended questions); in round two, each expert scored the importance of each item (from 0 to 10); in round three, they selected the 20 most relevant items. Throughout the rounds, the five main priority themes for research in SA were defined. In Round three, consensus was defined as an agreement of ≥75%. RESULTS: 60 potential suggestions for overcoming research barriers in PC were developed in round one. Also in Round one, 88.2% (15 of 17) of the experts agreed to define a priority research agenda. In Round two, the 36 most relevant suggestions were defined and a new one added. Potential research priorities were investigated (open-ended). In Round three, from the 37 items, 10 were considered the most important. Regarding research priorities, symptom control, PC in primary care, public policies, education and prognosis were defined as the most relevant. CONCLUSION: Potential strategies to improve scientific research on PC in SA were defined, including stimulating the formation of collaborative research networks, offering courses and workshops on research, structuring centers with infrastructure resources and trained researchers, and lobbying governmental organizations to convince about the importance of palliative care. In addition, priority research topics were identified in the region.

Physical exercise and fatigue in advanced gastrointestinal cancer during chemotherapy.

OBJECTIVES: This study was aimed to analyse the effect of a patient-oriented modality of physical exercise (programmed and directed physical exercise (PDPE)) on cancer-related fatigue (CRF) and quality of life (QoL). The secondary aim was to evaluate changes in body composition and skeletal muscle function during the study in patients with and without PDPE. METHODS: A prospective randomised study was conducted to analyse the impact of PDPE on CRF and QoL. Patients were selected before the development of CRF to set the intervention before its appearance. A high probability CRF population was chosen: patients with advanced gastrointestinal cancer undergoing chemotherapy with weight loss (≥5%) over the last 6 months. PDPE consisted of a programme of exercise delivered weekly and adjusted to patients' medical conditions. Four visits were planned (weeks 0, 4, 8 and 12). QoL, CRF, body composition and skeletal muscle function were evaluated in each visit. RESULTS: From 101 patients recruited, 64 were considered evaluable, with three or four visits completed (n=30 control, n=34 PDPE group). Satisfactory compliance of ≥50% to the PDPE programme was seen in 47%. A reduction in the severity of fatigue was detected in the PDPE group (p=0.019), being higher in the subgroup of satisfactory compliance (p<0.001). This latter group showed better results of QoL in comparison with the control group (p=0.0279). A significant increase in endurance was found in the PDPE group (p<0.001). CONCLUSION: PDPE reduced the severity of fatigue and improved QoL. The difference in endurance would explain the results seen in the severity of fatigue.

Evaluating Pain Management Practices for Cancer Patients among Health Professionals: A Global Survey.

Background: Cancer incidence in the world is predicted to increase in the next decade. While progress has been in diagnosis and treatment, much still remains to be done to improve cancer pain therapy, mainly in underserved communities in low-income countries. Objective: To determine knowledge, beliefs, and barriers regarding pain management in both high- and low-income countries (according to the WHO classification); and to learn about ways to improve the current state of affairs. Design: Descriptive survey. Setting/Subjects: Fifty-six countries worldwide; convenience sample of 1639 consisted of 36.8% physicians; 45.1% nurses, and 4.5% pharmacists employed in varied settings. Results: Improved pain management services are key elements. Top barriers include religion factors, lack of appropriate education and training at all levels, nonadherence to guidelines, patients' reluctance to report on pains, over regulation associated with prescribing and access to opioid analgesics, fear of addiction to opioids, and lack of discussions around prognosis and treatment planning. Conclusion: The majority of patients with cancer in low-income countries are undertreated for their pain. Promoting cancer pain accredited program of training and education on pain management for physicians and nurses is crucial, as well as advocating policymakers and the public at large.

Palliative and prognostic approach in cancer patients identified in the multicentre NECesidades PALiativas 2 study in Argentina.

BACKGROUND: Early identification of palliative needs has proven benefits in quality of life, survival and decision-making. The NECesidades PALiativas (NECPAL) Centro Coordinador Organización Mundial de la Salud - Instituto Catalán de Oncología (CCOMS-ICO©) tool combines the physician's insight with objective disease progression parameters and advanced chronic conditions. Some parameters have been independently associated with mortality risk in different populations. According to the concept of the 'prognostic approach' as a companion of the 'palliative approach', predictive models that identify individuals at high mortality risk are needed. OBJECTIVE: We aimed to identify prognostic factors of mortality in cancer in our cultural context. METHOD: We assessed cancer patients with palliative needs until death using this validated predictive tool at three hospitals in Buenos Aires City. This multifactorial, quantitative and qualitative non-dichotomous assessment process combines subjective perception (the surprise question: Would you be surprised if this patient dies in the next year?) with other parameters, including the request (and need) for palliative care (PC), the assessment of disease severity, geriatric syndromes, psychosocial factors and comorbidities, as well as the use of healthcare resources. RESULTS: 2,104 cancer patients were identified, 681 were NECPAL+ (32.3%). During a 2-year follow-up period, 422 NECPAL+ patients died (61.9%). The mean overall survival was 8 months. A multivariate model was constructed with significant indicators in univariate analysis. The best predictors of mortality were: nutritional decline (p < 0.000), functional decline (p < 0.000), palliative performance scale (PPS) ≤ 50 (p < 0.000), persistent symptoms (p < 0.002), functional dependence (p < 0.000), poor treatment response (p < 0.000), primary cancer diagnosis (p = 0.024) and condition (in/outpatients) (p < 0.000). Only three variables remained as survival predictors: low response to treatment (p < 0.001), PPS ≤ 50 (p < 0.000) and condition (in/outpatients) (p < 0.000). CONCLUSION: This prospective model aimed to improve cancer survival prediction and timely PC referral in Argentinian hospitals.

Development of an international Core Outcome Set (COS) for best care for the dying person: study protocol.

BACKGROUND: In contrast to typical measures employed to assess outcomes in healthcare such as mortality or recovery rates, it is difficult to define which specific outcomes of care are the most important in caring for dying individuals. Despite a variety of tools employed to assess different dimensions of palliative care, there is no consensus on a set of core outcomes to be measured in the last days of life. In order to optimise decision making in clinical practice and comparability of interventional studies, we aim to identify and propose a set of core outcomes for the care of the dying person. METHODS: Following the COMET initiative approach, the proposed study will proceed through four stages to develop a set of core outcomes: In stage 1, a systematic review of the literature will identify outcomes measured in existing peer reviewed literature, as well as outcomes derived through qualitative studies. Grey literature, will also be included. Stage 2 will allow for the identification and determination of patient and proxy defined outcomes of care at the end of life via quantitative and qualitative methods at an international level. In stage 3, from a list of salient outcomes identified through stages 1 and 2, international experts, family members, patients, and patient advocates will be asked to score the importance of the preselected outcomes through a Delphi process. Stage 4 consists of a face-to-face consensus meeting of international experts and patient/family representatives in order to define, endorse, and propose the final Core Outcomes Set. DISCUSSION: Core Outcome Sets aim at promoting uniform assessment of care outcomes in clinical practice as well as research. If consistently employed, a robust set of core outcomes for the end of life, and specifically for the dying phase, defined by relevant stakeholders, can ultimately be translated into best care for the dying person. Patient care will be improved by allowing clinicians to choose effective and meaningful treatments, and research impact will be improved by employing internationally agreed clinically relevant endpoints and enabling accurate comparison between studies in systematic reviews and/or in meta-analyses.

Development and validation of the Short Professional Quality of Life Scale based on versions IV and V of the Professional Quality of Life Scale.

BACKGROUND: This research presents a short version of the Professional Quality of Life (ProQOL) scale, one of the most frequently used questionnaires in the arena of applied healthcare investigation. It measures burnout (BO), compassion fatigue (CF), and compassion satisfaction (CS). METHODS: A 9-item version of the ProQOL was developed. In Study 1, this short version, which used items from version IV of the ProQOL, was administered to 817 palliative care professionals from Spain, Argentina, and Brazil. In Study 2, the same nine items, but this time from version V of the ProQOL, were administered to 296 Spanish palliative care professionals. RESULTS: Study 1: The Short ProQOL showed an adequate internal structure, and invariance across the countries studied (χ2(106) = 185.620 (p < 0.001), CFI = .929, RMSEA = 0.058 [0.044, 0.072], SRMR = 0.081). Argentinians showed higher levels of BO (mean difference = 0.172, p = 0.042, Cohen's d = 0.168), whereas Brazilians showed higher levels of CF (Mean difference = 0.384, p = 0.002, Cohen's d = 0.352). Study 2: the Short ProQOL again showed adequate internal structure and reliability (χ2(24) = 134.504 (p < 0.001); CFI = 0.953; RMSEA = 0.126 [0.106, 0.147]; SRMR = 0.063), and was related to coping with death, self-compassion, and self-care. CONCLUSIONS: The Short ProQOL could help facilitate the application of harmonizing measurements and its use for cross-cultural comparisons and occupational health monitoring was satisfactory.

Modelo demostrativo de identificación precoz y atención continua de pacientes con cáncer y necesidad paliativas / Demonstrative model for early identification and continuous care of cancer patients with palliative needs

Los cuidados paliativos (CP) se incorporaron en la salud pública de muchos países con gran variabilidad e inequidad. Argentina posee una incidencia de cáncer media-alta y el Programa Nacional de Cuidados Paliativos no identifica la población diana. El instrumento NECPAL CCOMS-ICO© identifica enfermos con necesidades paliativas. Combina una pregunta (¿Le sorprendería que su paciente falleciera en el próximo año?) con indicadores específicos. El objetivo fue identificar precozmente y mejorar la asistencia integral de pacientes con cáncer y necesidades paliativas. Se reporta la implementación de una intervención sanitaria (Programa Modelo de Atención Paliativa). MÉTODOS: Se incluyó a todos los pacientes oncológicos del hospital universitario (julio de 2014- julio de 2016). Se entrevistó a sus 10 médicos en 69 sesiones individuales con el NECPAL. Se diseñó un programa demostrativo en 4 etapas. RESULTADOS: Hubo 317 pacientes, 57% con necesidades paliativas (NECPAL+). Como resultado de la implementación, el 94% (n=172) de 183 pacientes NECPAL+ fueron derivados a CP (frente a 28% antes del programa); media de seguimiento de 7,4 meses y 183 fallecieron (28 en domicilio). Se superaron estándares de calidad de estructura, proceso y resultado. DISCUSIÓN: Por primera vez en Argentina, esta intervención sanitaria incluyó a casi la totalidad de pacientes con cáncer y necesidades paliativas tempranas en un programa de asistencia continua hasta su fallecimiento en el hospital o domicilio.

[Analysis of the results of a palliative care quality program for the last days of life. Ten years of experience]. / Análisis de los resultados de un programa de calidad en cuidados paliativos para los últimos días de vida. Diez años de experiencia.

The integrated care pathways for the last days of life propose quality standards optimizing the care of patients and families. The Pallium Multidisciplinary Assistance Program (PAMPA ©) was implemented based on standards of the International Collaborative for Best Care for the Dying Person in 4 phases: induction, implementation, dissemination and sustainability, in five health centres in Argentina, between 2008 and 2018. A total of 1237 adult patients in the last days of life were included and cared for by palliative care teams trained in PAMPA©. An audit was conducted before and after the implementation of the Program, which is still going on. The median range of follow up into five centres from the beginning of the pathway until death varied from 16 to 178 hours. Care goals were compared: symptom control, communication, multidimensional needs, hydration and nutrition, documentation of interventions and post-mortem care. The overall analysis showed an improvement in the number of records (p = 0.001). The goal of communication on care plan to the patient showed no difference (p = 0.173). Continuous training, support and permanent teams supervision were carried out and perceptions and impact of the implementation were registered. The main emerging items of the qualitative analysis were: attitudes towards the program, fundamental contributions, strengths, weaknesses and subjective definition of the program, recognition of institutional cultural singularities and its influence on care. PAMPA© demonstrated its feasibility as a model of end of life care for patients and families, based on international quality standards.

Las secuencias integradas de cuidado para últimos días de vida proponen estándares de calidad para optimizar la atención de pacientes y familias. Se implementó el Programa Asistencial Multidisciplinario Pallium (PAMPA©) basado en estándares del International Collaborative for Best Care for the Dying Person en cuatro fases: inducción, implementación, diseminación y sustentabilidad, en cinco centros de salud en Argentina, entre 2008 y 2018. Se incluyeron 1237 pacientes adultos en situación de últimos días de vida, en seguimiento por equipos de cuidados paliativos entrenados en el PAMPA©. Se efectuó una auditoría antes y después de la ejecución del programa, aún en curso. El rango de medianas de permanencia en los cinco centros desde el inicio de la secuencia hasta el fallecimiento fue de 16 a 178 horas. Se compararon objetivos de cuidado: control de síntomas, comunicación, necesidades multidimensionales, hidratación y nutrición, documentación de intervenciones y cuidados post mortem. El análisis conjunto mostró una mejoría del número de registros (p = 0.001). La comunicación del plan de cuidados con el paciente no mostró diferencias (p = 0.173). Se realizó capacitación y supervisión permanente a los equipos profesionales de quienes se registraron percepciones de la implementación. Los principales emergentes de este análisis cualitativo fueron: actitudes ante el programa, aportes fundamentales, fortalezas, debilidades y definición subjetiva del programa, reconocimiento de las singularidades culturales institucionales y su influencia en el cuidado. El PAMPA© demostró la factibilidad de un modelo de atención para pacientes y familias en final de vida, basado en estándares de calidad internacionales.

Análisis de los resultados de un programa de calidad en cuidados paliativos para los óltimos días de vida: Diez aóos de experiencia / Analysis of the results of a palliative care quality program for the last days of life. Ten years of experience

Las secuencias integradas de cuidado para ó;ºltimos días de vida proponen estándares de calidad para optimizar la atenció;n de pacientes y familias. Se implementó; el Programa Asistencial Multidisciplinario Pallium (PAMPA©) basado en estándares del International Collaborative for Best Care for the Dying Person en cuatro fases: inducció;n, implementació;n, diseminació;n y sustentabilidad, en cinco centros de salud en Argentina, entre 2008 y 2018. Se incluyeron 1237 pacientes adultos en situació;n de ó;ºltimos días de vida, en seguimiento por equipos de cuidados paliativos entrenados en el PAMPA©. Se efectuó; una auditoría antes y despuó;©s de la ejecució;n del programa, aó;ºn en curso. El rango de medianas de permanencia en los cinco centros desde el inicio de la secuencia hasta el fallecimiento fue de 16 a 178 horas. Se compararon objetivos de cuidado: control de síntomas, comunicació;n, necesidades multidimensionales, hidratació;n y nutrició;n, documentació;n de intervenciones y cuidados post mortem. El análisis conjunto mostró; una mejoría del nó;ºmero de registros (p = 0.001). La comunicació;n del plan de cuidados con el paciente no mostró; diferencias (p = 0.173). Se realizó; capacitació;n y supervisió;n permanente a los equipos profesionales de quienes se registraron percepciones de la implementació;n. Los principales emergentes de este análisis cualitativo fueron: actitudes ante el programa, aportes fundamentales, fortalezas, debilidades y definició;n subjetiva del programa, reconocimiento de las singularidades culturales institucionales y su influencia en el cuidado. El PAMPA© demostró; la factibilidad de un modelo de atenció;n para pacientes y familias en final de vida, basado en estándares de calidad internacionales.

The integrated care pathways for the last days of life propose quality standards optimizing the care of patients and families. The Pallium Multidisciplinary Assistance Program (PAMPA©) was implemented based on standards of the International Collaborative for Best Care for the Dying Person in 4 phases: induction, implementation, dissemination and sustainability, in five health centres in Argentina, between 2008 and 2018. A total of 1237 adult patients in the last days of life were included and cared for by palliative care teams trained in PAMPA©. An audit was conducted before and after the implementation of the Program, which is still going on. The median range of follow up into five centres from the beginning of the pathway until death varied from 16 to 178 hours. Care goals were compared: symptom control, communication, multidimensional needs, hydration and nutrition, documentation of interventions and post-mortem care. The overall analysis showed an improvement in the number of records (p = 0.001). The goal of communication on care plan to the patient showed no difference (p = 0.173). Continuous training, support and permanent teams supervision were carried out and perceptions and impact of the implementation were registered. The main emerging items of the qualitative analysis were: attitudes towards the program, fundamental contributions, strengths, weaknesses and subjective definition of the program, recognition of institutional cultural singularities and its influence on care. PAMPA© demonstrated its feasibility as a model of end of life care for patients and families, based on international quality standards.

A Brief Measure for the Assessment of Competence in Coping With Death: The Coping With Death Scale Short Version.

CONTEXT: The coping with death competence is of great importance for palliative care professionals, who face daily exposure to death. It can keep them from suffering compassion fatigue and burnout, thus enhancing the quality of the care provided. Despite its relevance, there are only two measures of professionals' ability to cope with death. Specifically, the Coping with Death Scale (CDS) has repeatedly shown psychometric problems with some of its items. OBJECTIVE: The aim of this study was to develop and validate a short version of the CDS. METHODS: Nine items from the original CDS were chosen for the short version. Two cross-sectional surveys were conducted in Spanish (N = 385) and Argentinian (N = 273) palliative care professionals. The CDS and the Professional Quality of Life Scale were used in this study. Statistical analyses included two confirmatory factor analyses (CFAs), followed by a standard measurement invariance routine. Reliability estimates and evidence of validity based on relations with other measures were also gathered. RESULTS: CFA models had excellent fit in both the Spanish (χ2(27) = 107.043, P < 0.001; Comparative Fit Index [CFI] = 0.978; Tucker-Lewis Index [TLI] = 0.970; Root Mean Square Error of Approximation [RMSEA] = 0.093 [0.075, 0.112]; Standardized Root Mean Square Residual = 0.030) and Argentinian (χ2(27) = 102.982, P < 0.001; CFI = 0.963; TLI = 0.950; RMSEA = 0.106 [0.085, 0.128]) samples. A standard measurement invariance routine was carried out. The most parsimonious model (χ2(117) = 191.738, P < 0.001; CFI = 0.987; TLI = 0.992; RMSEA = 0.046 [0.034, 0.058]; Standardized Root Mean Square Residual = 0.043) offered evidence of invariance across countries, with no latent mean differences. Evidence of reliability and evidence of validity based on relations with other measures were also appropriate. CONCLUSION: Results indicated the psychometric boundaries of the short version of the CDS.

[Palliative care needs in advanced chronic illness]. / Atención paliativa en personas con enfermedades crónicas avanzadas.

About 75% of population will die from one or more chronic progressive diseases. From this projection WHO urged countries to devise strategies for strengthening palliative treatment as part of comprehensive care. In Catalonia, Spain, direct measurement of the prevalence of these patients with NECPAL CCOMS-ICO© tool was 1.5% of the population. This tool is an indicative, not dichotomous, quali-quantitative multifactorial evaluation to be completed by the treating physician. In Argentina there is no information on these patients. Our goal was to explore and characterize the proportion of chronically ill patients in palliative care needs, by NECPAL CCOMS-ICO© tool, in an accessible population of the City of Buenos Aires. General hospitals of the Health Region 2 (Piñero, álvarez and Santojanni) and its program areas were surveyed. In Health Region 1, we surveyed the Udaondo gastroenterology hospital. A total of 53 physicians (704 patients) were interviewed. It was identified that 29.5% of these patients were affected by advanced chronic diseases; 72.1% of them were NECPAL positive, younger (median 64) than in others studies, and more than 98% presented high levels of comorbidity. Palliative care demand (31.4%) and needs (52.7%) were recorded. Specific indicators of fragility, progression, severity and kind of chronic disease were described. The main finding was to identify, with an instrument not based on mortality that, in Buenos Aires City, 1 in 3 patients with chronic diseases could die in the next year and had palliative care needs.

Atención paliativa en personas con enfermedades crónicas avanzadas / Palliative care needs in advanced chronic illness

Alrededor del 75% de las personas morirá a causa de una o varias enfermedades crónicas progresivas. A partir de esta proyección, la OMS instó a los países a diseñar estrategias para el fortalecimiento de los cuidados paliativos como parte del tratamiento integral. En Cataluña, España, la medición de la prevalencia de estos pacientes según el debe decir NECPAL CCOMS-ICO© fue de 1.5% de la población. Es una evaluación cuali-cuantitativa, multifactorial indicativa y no dicotómica que completa el médico tratante. En Argentina no conocemos información sobre estos enfermos. Nuestro objetivo fue explorar y caracterizar en una población accesible de la Ciudad Autónoma de Buenos Aires la proporción de pacientes crónicos con necesidades de atención paliativa, mediante el NECPAL CCOMS-ICO©. Se relevaron los hospitales generales de la Región Sanitaria 2: (Piñero, Álvarez y Santojanni) y sus áreas programáticas. En la Región Sanitaria 1 se incorporó al hospital Udaondo de gastroenterología. Se entrevistaron 53 médicos (704 pacientes). Se identificó que 29.5% presentaba enfermedades crónicas avanzadas; el 72.1% de esos pacientes eran NECPAL positivos, más jóvenes que en otros estudios (mediana 64) y más del 98% tenían alto índice de comorbilidad. Se registró la demanda (31.4%) y necesidad (52.7%) de atención paliativa. Se describieron indicadores específicos de fragilidad, progresión y gravedad según enfermedad crónica. El principal hallazgo fue identificar, con un instrumento no basado en la mortalidad, que, en la ciudad de Buenos Aires, 1 de cada 3 pacientes con enfermedades crónicas podría morir en el próximo año y tenía necesidades de atención paliativa.

About 75% of population will die from one or more chronic progressive diseases. From this projection WHO urged countries to devise strategies for strengthening palliative treatment as part of comprehensive care. In Catalonia, Spain, direct measurement of the prevalence of these patients with NECPAL CCOMS-ICO© tool was 1.5% of the population. This tool is an indicative, not dichotomous, quali-quantitative multifactorial evaluation to be completed by the treating physician. In Argentina there is no information on these patients. Our goal was to explore and characterize the proportion of chronically ill patients in palliative care needs, by NECPAL CCOMS-ICO© tool, in an accessible population of the City of Buenos Aires. General hospitals of the Health Region 2 (Piñero, Álvarez and Santojanni) and its program areas were surveyed. In Health Region 1, we surveyed the Udaondo gastroenterology hospital. A total of 53 physicians (704 patients) were interviewed. It was identified that 29.5% of these patients were affected by advanced chronic diseases; 72.1% of them were NECPAL positive, younger (median 64) than in others studies, and more than 98% presented high levels of comorbidity. Palliative care demand (31.4%) and needs (52.7%) were recorded. Specific indicators of fragility, progression, severity and kind of chronic disease were described. The main finding was to identify, with an instrument not based on mortality that, in Buenos Aires City, 1 in 3 patients with chronic diseases could die in the next year and had palliative care needs.

Issues and needs in end-of-life decision making: an international modified Delphi study.

BACKGROUND: end-of-life decision making is an important aspect of end-of-life care that can have a significant impact on the process of dying and patients' comfort in the last days of life. AIM: the aim of our study was to identify issues and considerations in end-of-life decision making, and needs for more evidence among palliative care experts, across countries and professions. PARTICIPANTS: 90 palliative care experts from nine countries participated in a modified Delphi study. Participants were asked to identify important issues and considerations in end-of-life decision making and to rate the need for more evidence. RESULTS: experts mentioned 219 issues in end-of-life decision making related to the medical domain, 122 issues related to the patient wishes and 92 related to relatives' wishes, regardless of profession or country (p > 0.05). In accordance, more than 90% of the experts rated the comfort and wishes of the patient and the potential futility of treatment as important considerations in end-of-life decision making, although some variation was present. When asked about issues that are in need of more evidence, 87% mentioned appropriate indications for using sedatives and effects of artificial hydration at the end of life. A total of 83% mentioned adequate communication approaches. CONCLUSIONS: palliative care experts from different professions in different countries encounter similar issues in end-of-life decision making. Adequate communication about these issues is universally experienced as a challenge, which might benefit from increased knowledge. This shared experience enables and emphasizes the need for more international research.