Proyecto NECPAL CCOMS-ICO para la identificación de personas con enfermedades crónicas avanzadas y necesidades de atención paliativa en la Ciudad de Buenos Aires, Argentina

Alrededor del 75% de las personas morirá a causa de una o varias enfermedades crónicas avanzadas (ECA) que requieren atención paliativa (AP). En Cataluña, la medición de la prevalencia de estos pacientes según el NECPAL CCOMS-ICO© fue de 1.5% de la población. En Argentina no conocemos información sobre estos enfermos. Objetivo: explorar y caracterizar en una población de la Ciudad Autónoma de Buenos Aires la proporción de pacientes con necesidades de AP. Se evaluaron 3 hospitales generales más un hospital de gastroenterología. Se entrevistaron 53 médicos (704 pacientes). El 29.5% presentaba ECA; el 72.1% de eran NECPAL +, (mediana 64 años) 98% tenían alto índice de comorbilidad. Se registró la demanda (31.4%) y necesidad (52.7%) de AP. Se describieron indicadores de fragilidad, progresión y gravedad. El principal hallazgo fue identificar que 1 de cada 3 pacientes con ECA podrían morir en el próximo año y tenían necesidades de AP.About 75% of population will die from one or more chronic progressive diseases with palliative care (PC)needs. In Catalonian, direct measurement of the prevalence of these patients with NECPAL WHOCC-ICO© tool was 1.5% of the population. In Argentina there is no information on these patients. Aim: to explore and characterize in a population of Buenos Aires City the proportion of patients in PC needs. 3 General hospitals and the gastroenterology hospital were surveyed. 53 physicians (704 patients) were interviewed. It was identified that 29.54% were affected by advanced chronic diseases; 72.1% of these patients were NECPAL+ (median age 64) and further of 98% had high levels of comorbidity. PC demand (31.4%) and need (52.7%) was recorded. Specific indicators of fragility, progression, severity and kind of chronic disease were described. The main finding was to identify 1 in 3 chronic patients with PC needs, not based on mortality

Percepciones del impacto de la pandemia de Covid-19 en los profesionales de la salud en Latinoamérica

La pandemia COVID-19, ha producido un gran impacto sobre la salud mental y emocional de los profesionales. En situaciones de crisis, todo esfuerzo por cuidar al que cuida es un imperativo ético. Desde la Asociación Latinoamericana de Cuidados Paliativos,  indagamos las  percepciones del equipo de salud, focalizando en: los desafíos de los cuidados en salud, la perspectiva de género, y el impacto emocional de los que cuidan.Metodología: entre marzo y junio/2020, se utilizó un cuestionario semi estructurado, auto administrado, en línea a profesionales de Cuidados Paliativos, de 44 preguntas sobre cambios de vida, impacto emocional, estrés y comentarios abiertos. Se realizó un análisis descriptivo, bivariado de asociaciones entre variables sociodemográficas e impacto emocional. El análisis cualitativo se realizó según la teoría fundamentada.Resultados: 726 encuestas de 19 países latinoamericanos. El 76% eran de género femenino, 58% médico/as, 62,5% consideró que su profesión lo/a ponía en riesgo, 76% no habían recibido apoyo psicológico, 30% estaba muy estresado/as. La ansiedad, miedo a contagiarse o contagiar, sueño, cansancio, dificultad para concentrarse y desánimo, mostraron diferencias significativas entre los grupos de edad siendo mayor en lo/as más jóvenes y en enfermero/s (p<0.05 a p<0.001). El análisis cualitativo demostró miedo, sobrecarga, incertidumbre, impotencia de los profesionales individual y colectivamente y preocupaciones sobre el  sistema de salud  y la sociedad.Conclusión: A partir de este estudio proponemos incorporar las dimensiones del cuidado en las políticas proactivas preventivas de estrés post traumático para afrontar la post pandemia para todos los profesionales

Hospital care for the dying patient with cancer: does an advance care planning invitation influence bereaved relatives' experiences? A two country survey

Objectives: Advance care planning (ACP) is not systematically performed in Argentina or Norway. We used the post-bereavement survey of the ERANet-LAC International Care Of the Dying Evaluation (CODE) project (2017–2020) to examine the proportion of relatives who were offered an ACP conversation, the proportion of those not offered it who would have wanted it and whether the outcomes differed between those offered a conversation and those not. Methods: Relatives after cancer deaths in hospitals answered the CODE questionnaire 6–8 weeks post bereavement, by post (Norway) or interview (Argentina). Two additional questions asked if the relative and patient had been invited to a conversation about wishes for the patient’s remaining lifetime, and, if not invited, whether they would have wanted such a conversation. The data were analysed using mixed-effects ordinal regression models. Results: 276 participants (Argentina 98 and Norway 178) responded (56% spouses, 31% children, 68% women, age 18–80+). Fifty-six per cent had been invited, and they had significantly more positive perceptions about care and support than those not invited. Sixty-eight per cent of the participants not invited would have wanted an invitation, and they had less favourable perceptions about the care, especially concerning emotional and spiritual support. Conclusions: Relatives who had been invited to a conversation about wishes for the patient’s remaining lifetime had more positive perceptions about patient care and support for the relatives in the patient’s final days of life. A majority of the relatives who had not been invited to an ACP conversation would have wanted it.publishedVersio

Lessons learned from self-efficacy of healthcare professionals for advance care planning

Background: Advance care planning (ACP) is a reflective, deliberative, and structured process based on dialogue and free agreement between the person concerned and healthcare professionals. Argentina has no national ACP program or systematic approach for patients diagnosed with advanced chronic disease. Healthcare providers who treat these patients highlight some main obstacles in initiating the ACP process. Perceived self-efficacy is one of the main predictors of success in learning processes and promotes the acquisition of new behaviours and positive results in implementing ACP. We aimed to sensitise professionals and explore their self-efficacy for ACP before specific training. Participants and methods: This exploratory, prospective, descriptive study used the self-efficacy ACP-SEs scale already validated in Argentina. We surveyed 236 healthcare professionals (n 125 physicians/n 111 non-physicians) before specific training courses (2019–2021). Results: Participants’ experience, training needs, and practices. Most respondents were females (43 years old). Non-physicians (n 111) were 40 nurses, 32 psychologists, 16 social workers, 15 physiotherapists, and 8 other health backgrounds. Over 50% had 5–20 years of professional and primary care experience. When comparing professions, half of the physicians increased by up to 5.23 points higher on the self-efficacy scale than non-physicians. Most participants had no personal advance directives and neither helped a relative nor a patient sign a document. Half of the participants had previously undergone training. Half of the professionals who had done ACP significantly increased their value on the scale by up to 7.5 points more than those who did not. Differences between physicians and non-physicians revealed areas of improvement involving communication skills, roles and tasks, and legal issues. Conclusions: Healthcare providers' skills improve with experience and require training to increase self-efficacy. Our findings should encourage tailor-made training programs in the future. One of the goals of this study was to spark discussions before specific training courses and develop appropriate teaching methods based on perceived self-efficacy in Argentina

One chance to get it right: improving clinical handovers for better symptom control at the end of life.

Poor communication contributes to morbidity and mortality, not only in general medical care but also at the end oflife. This leads to issues relating to symptom control and quality of care. As part of an international project focused on bereaved relatives’ perceptions about quality of end-of-life care, we undertook a quality improvement (QI) project in a general hospital in Córdoba city, Argentina. By using two iterative QI cycles, we launched an educational process and introduced a clinical mnemonic tool, I-PASS, during ward handovers. The introduction of the handover tool was intended to improve out-of-hours care. Our clinical outcome measure was ensuring comfort in at least 60% of dying patients, as perceived by family carers, during night shifts in an oncology ward during the project period (March–May 2019). As process-based measures, we selected the proportion of staff completing the I-PASS course (target 60%) and using I-PASS in at least 60% of handovers. Participatory action research was the chosen method. During the study period, 13/16 dying patients were included. We received 23 reports from family carers about the level of patient comfort during the previous night. Sixty-five per cent of healthcare professionals completed the I-PASS training. The percentage of completed handovers increased from 60% in the first Plan-Do-Study-Act (PDSA) cycle to 68% in the second one. The proportion of positive reports about patient comfort increased from 63% (end of the first PDSA cycle) to 87% (last iterative analysis after 3 months). Moreover, positive responses to ‘Did doctors and nurses do enough for the patient to be comfortable during the night?’ increased from 75% to 100% between the first and the second QI cycle. In conclusion, we achieved the successful introduction and staff training for use of the I-PASS tool. This led to improved perceptions by family carers, about comfort for dying patients

Assessing quality of care for the dying from the bereaved relatives’ perspective: using pre-testing survey methods across seven countries to develop an international outcome measure

Background: The provision of care for dying cancer patients varies on a global basis. In order to improve care, we need to be able to evaluate the current level of care. One method of assessment is to use the views from the bereaved relatives. Aim: The aim of this study is to translate and pre-test the ‘Care Of the Dying Evaluation’ (CODETM) questionnaire across seven participating countries prior to conducting an evaluation of current quality of care. Design: The three stages were as follows: (1) translation of CODE in keeping with standardised international principles; (2) pre-testing using patient and public involvement and cognitive interviews with bereaved relatives; and (3) utilising a modified nominal group technique to establish a common, core international version of CODE. Setting/participants: Hospital settings: for each country, at least five patient and public involvement representatives, selected by purposive sampling, fed back on CODETM questionnaire; and at least five bereaved relatives to cancer patients undertook cognitive interviews. Feedback was collated and categorised into themes relating to clarity, recall, sensitivity and response options. Structured consensus meeting held to determine content of international CODE (i-CODE) questionnaire. Results: In total, 48 patient and public involvement representatives and 35 bereaved relatives contributed to the pre-testing stages. No specific question item was recommended for exclusion from CODETM. Revisions to the demographic section were needed to be culturally appropriate. Conclusion: Patient and public involvement and bereaved relatives’ perceptions helped enhance the face and content validity of i-CODE. A common, core international questionnaire is now developed with key questions relating to quality of care for the dying

Hospital care for the dying patient with cancer: does an advance care planning invitation influence bereaved relatives' experiences? A two country survey

Objectives Advance care planning (ACP) is not systematically performed in Argentina or Norway. We used the post-bereavement survey of the ERANet-LAC International Care Of the Dying Evaluation (CODE) project (2017–2020) to examine the proportion of relatives who were offered an ACP conversation, the proportion of those not offered it who would have wanted it and whether the outcomes differed between those offered a conversation and those not. Methods Relatives after cancer deaths in hospitals answered the CODE questionnaire 6–8 weeks post bereavement, by post (Norway) or interview (Argentina). Two additional questions asked if the relative and patient had been invited to a conversation about wishes for the patient’s remaining lifetime, and, if not invited, whether they would have wanted such a conversation. The data were analysed using mixed-effects ordinal regression models. Results 276 participants (Argentina 98 and Norway 178) responded (56% spouses, 31% children, 68% women, age 18–80+). Fifty-six per cent had been invited, and they had significantly more positive perceptions about care and support than those not invited. Sixty-eight per cent of the participants not invited would have wanted an invitation, and they had less favourable perceptions about the care, especially concerning emotional and spiritual support. Conclusions Relatives who had been invited to a conversation about wishes for the patient’s remaining lifetime had more positive perceptions about patient care and support for the relatives in the patient’s final days of life. A majority of the relatives who had not been invited to an ACP conversation would have wanted it

Hospital care for the dying patient with cancer: does an advance care planning invitation influence bereaved relatives' experiences? A two country survey

Objectives Advance care planning (ACP) is not systematically performed in Argentina or Norway. We used the post-bereavement survey of the ERANet-LAC International Care Of the Dying Evaluation (CODE) project (2017–2020) to examine the proportion of relatives who were offered an ACP conversation, the proportion of those not offered it who would have wanted it and whether the outcomes differed between those offered a conversation and those not. Methods Relatives after cancer deaths in hospitals answered the CODE questionnaire 6–8 weeks post bereavement, by post (Norway) or interview (Argentina). Two additional questions asked if the relative and patient had been invited to a conversation about wishes for the patient’s remaining lifetime, and, if not invited, whether they would have wanted such a conversation. The data were analysed using mixed-effects ordinal regression models. Results 276 participants (Argentina 98 and Norway 178) responded (56% spouses, 31% children, 68% women, age 18–80+). Fifty-six per cent had been invited, and they had significantly more positive perceptions about care and support than those not invited. Sixty-eight per cent of the participants not invited would have wanted an invitation, and they had less favourable perceptions about the care, especially concerning emotional and spiritual support. Conclusions Relatives who had been invited to a conversation about wishes for the patient’s remaining lifetime had more positive perceptions about patient care and support for the relatives in the patient’s final days of life. A majority of the relatives who had not been invited to an ACP conversation would have wanted it

One chance to get it right: Improving clinical handovers for better symptom control at the end of life

Poor communication contributes to morbidity and mortality, not only in general medical care but also at the end oflife. This leads to issues relating to symptom control and quality of care. As part of an international project focused on bereaved relatives’ perceptions about quality of end-of-life care, we undertook a quality improvement (QI) project in a general hospital in Córdoba city, Argentina. By using two iterative QI cycles, we launched an educational process and introduced a clinical mnemonic tool, I-PASS, during ward handovers. The introduction of the handover tool was intended to improve out-of-hours care. Our clinical outcome measure was ensuring comfort in at least 60% of dying patients, as perceived by family carers, during night shifts in an oncology ward during the project period (March–May 2019). As process-based measures, we selected the proportion of staff completing the I-PASS course (target 60%) and using I-PASS in at least 60% of handovers. Participatory action research was the chosen method. During the study period, 13/16 dying patients were included. We received 23 reports from family carers about the level of patient comfort during the previous night. Sixty-five per cent of healthcare professionals completed the I-PASS training. The percentage of completed handovers increased from 60% in the first Plan-Do-Study-Act (PDSA) cycle to 68% in the second one. The proportion of positive reports about patient comfort increased from 63% (end of the first PDSA cycle) to 87% (last iterative analysis after 3 months). Moreover, positive responses to ‘Did doctors and nurses do enough for the patient to be comfortable during the night?’ increased from 75% to 100% between the first and the second QI cycle. In conclusion, we achieved the successful introduction and staff training for use of the I-PASS tool. This led to improved perceptions by family carers, about comfort for dying patients

Hospital care for the dying patient with cancer: does an advance care planning invitation influence bereaved relatives' experiences? A two country survey.

ObjectivesAdvance care planning (ACP) is not systematically performed in Argentina or Norway. We used the post-bereavement survey of the ERANet-LAC International Care Of the Dying Evaluation (CODE) project (2017-2020) to examine the proportion of relatives who were offered an ACP conversation, the proportion of those not offered it who would have wanted it and whether the outcomes differed between those offered a conversation and those not.MethodsRelatives after cancer deaths in hospitals answered the CODE questionnaire 6-8 weeks post bereavement, by post (Norway) or interview (Argentina). Two additional questions asked if the relative and patient had been invited to a conversation about wishes for the patient's remaining lifetime, and, if not invited, whether they would have wanted such a conversation. The data were analysed using mixed-effects ordinal regression models.Results276 participants (Argentina 98 and Norway 178) responded (56% spouses, 31% children, 68% women, age 18-80+). Fifty-six per cent had been invited, and they had significantly more positive perceptions about care and support than those not invited. Sixty-eight per cent of the participants not invited would have wanted an invitation, and they had less favourable perceptions about the care, especially concerning emotional and spiritual support.ConclusionsRelatives who had been invited to a conversation about wishes for the patient's remaining lifetime had more positive perceptions about patient care and support for the relatives in the patient's final days of life. A majority of the relatives who had not been invited to an ACP conversation would have wanted it