Depósito Académico
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- Report on palliative care development in Uruguay based on the WHO indicators(ATLANTES, WHO Collaborating Centre, Institute for Culture and Society, UNAV, 2023) Béjar, A.C. (Ana Cristina); Bastos, F.V. (Fernanda V.); Della-Valle, A. (Adriana); Garralda, E. (Eduardo); Tripodoro, V.A. (Vilma A.); Centeno, C. (Carlos); Núñez, A. (Ana); Montero, A. (Álvaro)This report describes the current palliative care (PC) situation in Uruguay, highlighting the challenges the country faces in providing PC to over 17,000 Uruguayans who – according to estimates – require PC each year. Commissioned by the WHO - PAHO representation in Uruguay, the WHO Collaborating Centre ATLANTES organised a two-day workshop in Montevideo to examine and adapt the WHO PC development indicators to the Uruguayan context in collaboration with the National PC Program. WHO invited representatives from the health, education, ministries, and social organisations sectors, who worked on a data collection tool whose responses could be categorised into four levels of development: initial, intermediate, established, and advanced. The report highlights each indicator’s strengths and weaknesses and summarises the level of implementation in each area of the country. The empowerment of individuals and communities is explored through two indicators. The first reveals a strong presence of patient and family associations advocating for PC and promoting patient rights, as well as the existence of the Uruguayan Society of Medicine and Palliative Care (SUMCP). The second confirms the existence of a national policy on advance care planning (advanced level). Since 2013, there has been a National PC Plan. PC services are included in the list of health services provided by the primary level of care (with an audit mechanism carried out by the Ministry of Public Health (MSP)), and there is a national authority coordinating PC care crystallised in the National PC Program. The latter depends on and is based on the MSP. Although it has no budget, it has a growing scientific and technical structure with adequate staff (advanced level).
- Report on palliative care development in Benin based on WHO indicators(ATLANTES, WHO Collaborating Centre, Institute for Culture and Society, UNAV, 2023) Bastos, F.V. (Fernanda V.); Benitez, E. (Edgar); Pons-Izquierdo, J.J. (Juan José); Garralda, E. (Eduardo); Tripodoro, V.A. (Vilma A.); Centeno, C. (Carlos); Agbogandé, A. (Anthelme); Gnangnon, F. (Freddy); Montero, A. (Álvaro)Palliative care (PC) is increasingly seen as a global health issue. This report examines the current state of PC in Benin, Africa, and the challenges the country faces in providing accessible and effective PC to its citizens. It has been estimated that more than 62,000 Beninese people need PC every year. The report highlights the importance of PC and the efforts of organisations such as the World Health Assembly, the Lancet Commission and the Astana Declaration to encourage governments to integrate PC into their health plans and make it accessible to all. A two-day hybrid meeting was organised in Cotonou by the WHO Collaborating Centre ATLANTES with WHO-Geneva, WHO-AFRO and WHO-Benin to examine and adapt a set of indicators to cultural realities. The WHO chose Benin and involved stakeholders from the health system, secondary education, vocational training and higher education sectors, as well as the Benin PC Association. ATLANTES provided a data collection tool based on the WHO Conceptual Framework and a four-level rating system: early, intermediate, established and advanced stage. The report highlights the strengths and weaknesses of each indicator and provides a summary of the level of implementation in each area.
- Caregivers burden in palliative care patients: a problem to tackle(Wolters Kluwer Health, 2016) Tripodoro, V.A. (Vilma A.); Veloso, V.I. (Verónica Inés)Family members who are close to the patient may play the role of caregiver, well-being enhancer, diversity of tasks fulfiller, minimizer and managing suffering, palliative care facilitator and responsible for the continuity of care, apprentice and participant of health teams. The family caregiver often gives priority to the problems of his dependent family member, becoming almost ‘invisible’ to the health system. It should also be consider the relevance of this issue into future bereavement process. Considering all these aspects, the family caregiver is often considered by the healthcare teams as ‘overall tasks’ performers’.
- How to Advance Palliative Care Research in South America? Findings From a Delphi Study(Elsevier, 2023) Hui, D. (David); Rodriguez, L.H. (Liliana Haydee); Tripodoro, V.A. (Vilma A.); Angelis-Nascimento, M.S. (Maria Salete) de; Crispim, D.H. (Douglas Henrique); Paiva, C.E. (Carlos Eduardo); Ribeiro-Paiva, B.S. (Bianca Sakamoto); Lima, L. (Liliana) de; Zimmerman, C. (Camilla); Pérez-Cruz, P. (Pedro); Pastrana, T. (Tania); Bruera, E. (Eduardo); Riveros-Ríos, M. (Miriam); Ruiz-Ospina, P.M. (Paola Marcela); Rodríguez-Núñez, A. (Alfredo)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 poli- cies, 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 resour- ces 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.
- Análisis de costo-efectividad de los cuidados paliativos a pacientes oncológicos de fin de vida(Escola Nacional de Saúde Pública Sergio Arouca, 2023) Lamfre, L. (Laura); Tripodoro, V.A. (Vilma A.); Hasdeu, S. (Santiago); Coller, M. (María)En pacientes con enfermedad terminal, los servicios de cuidados paliativos do- miciliarios pueden alinear sus preferencias de cuidado en domicilio con resul- tados sanitarios deseables. El objetivo fue estudiar la costo-efectividad de los cuidados paliativos domiciliarios en pacientes oncológicos en el último año de vida en el subsector público de salud de una provincia argentina. Se desarrolló un modelo de Markov de costo-efectividad desde una perspectiva social y del financiador de salud, de modo que el mismo pudiera reflejar la realidad de los cuidados paliativos domiciliarios en el ámbito local, en comparación con los cuidados habituales. Se calcularon los costos directos para el sistema de salud, con base en información local, así como también los costos indirectos de los cuidados informales no remunerados. La provisión de cuidados palia- tivos incrementó en un 10,32% la probabilidad que los pacientes fallezcan en el hogar, en relación con los cuidados habituales, con un ahorro anual de USD 750 y USD 1.012 por paciente desde la perspectiva social y del financia- dor, respectivamente, en el subsector público de salud de Río Negro. Tanto des- de la perspectiva social como del financiador, la estrategia de implementación de un servicio organizado de cuidados tiene una mayor efectividad, medida en porcentaje de pacientes que fallecen en su domicilio, a un menor costo. El prin- cipal inductor de costos corresponde, desde la perspectiva social, a los cuidados informales provistos por las familias, mientras que desde la perspectiva del financiador corresponde a los salarios del personal de salud.
- Place of death and associated factors in 12 Latin American countries: A total population study using death certificate data(International Society of Global Health, 2022) Cartin, A. (Andrea); Marcucci, F.C.I. (Fernando Cesar Iwamoto); Tripodoro, V.A. (Vilma A.); Pozo, X. (Ximena); Deliens, L. (Luc); Cardozo, E.A. (Emanuel Adrian); Cohen, J. (Joachim); Samayoa, V.R. (Víctor Rolando); Seitz, K. (Katja); Pastrana, T. (Tania); Colorado, M. (Marvin); Viana, L. (Leticia); Rodrigues, L.F. (Luís Fernando); Castañeda de la Lanza, C. (Celina)Background Little is known about place of death in Latin America, although this data are crucial for health system planning. This study aims to describe place of death and associated factors in Latin America and to identify factors that contribute to inter-country differences in place of death. Methods We conducted a total population observa- tional study using death certificates of the total annu- al decedent populations in 12 countries (Argentina, Brazil, Chile, Colombia, Costa Rica, El Salvador, Gua- temala, Ecuador, Mexico, Paraguay, Peru, and Uru- guay) for the most recent available year (2016, 2017, or 2018). Data were analysed regarding place of death and multivariable logistic regression with place of death as the dependent variable was used to exam- ine associated clinical and sociodemographic factors (independent variables) in each of the countries. Results The total study sample was 2994685 deaths; 31.3% of deaths occurred at home, and 57.6% in hospitals. A strong variation was found among the countries with home deaths ranging from 20% (Bra- zil) to 67.9% (Guatemala) and hospital deaths from 22.3% (Guatemala) to 69.5% (Argentina). These differences between countries remained largely un- changed after controlling for sociodemographic fac- tors and causes of death. The likelihood of dying at home was consistently higher with increasing age, for those living in a rural area, and for those with a lower educational level (except in Argentina). Conclusions Most deaths in Latin America occur in hospitals, with a strong variation between countries. As clinical and sociodemographic factors included in this study did not explain country differences, other factors such as policy and health care system seem to have a crucial impact on where people die in Lat- in America.
- Hospital care for the dying patient with cancer: does an advance care planning invitation influence bereaved relatives’ experiences? A two country survey(BMJ, 2023) Haugen, D.F. (Dagny Faksvåg); Tripodoro, V.A. (Vilma A.); Kvikstad, A. (Anne); Sigurdardottir, K. (Katrin); Hjorth, N.E. (Nina Elisabeth); Goldraij, G. (Gabriel); Hufthammer, K.O. (Karl Ove)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– 8weeks 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.
- Good Quality Care for Cancer Patients Dying in Hospitals, but Information Needs Unmet: Bereaved Relatives’ Survey within Seven Countries(Wiley Periodicals LLC, 2021) Mayland, C.R. (Catriona Rachel); Gerlach, C. (Christina); Haugen, D.F. (Dagny Faksvåg); Tripodoro, V.A. (Vilma A.); Weber, M. (Martin); Leppert, W. (Wojciech); Wolszczak, K. (Katarzyna); Passarini, J.N. (Juliana Nalin); Zambon, L. (Lair); García-Yanneo, E. (Eduardo); Saad, I.B. (Ivete Bredda); Sigurdardottir, K. (Katrin); Ellershaw, J. (John); Goldraij, G. (Gabriel); Hufthammer, K.O. (Karl Ove); Tuen-Hansen, M.I. (Marit Irene)Background. Recognized disparities in quality of end-of-life care exist. Our aim was to assess the quality of care for patients dying from cancer, as perceived by bereaved relatives, within hospitals in seven European and South American countries. Materials and Methods. A postbereavement survey was conducted by post, interview, or via tablet in Argentina, Brazil, Uruguay, U.K., Germany, Norway, and Poland. Next of kin to cancer patients were asked to complete the inter- national version of the Care Of the Dying Evaluation (i- CODE) questionnaire 6–8 weeks postbereavement. Pri- mary outcomes were (a) how frequently the deceased patient was treated with dignity and respect, and (b) how well the family member was supported in the patient’s last days of life. Results. Of 1,683 potential participants, 914 i-CODE questionnaires were completed (response rate, 54%). Approximately 94% reported the doctors treated their fam- ily member with dignity and respect “always” or “most of the time”; similar responses were given about nursing staff (94%). Additionally, 89% of participants reported they were adequately supported; this was more likely if the patient died on a specialist palliative care unit (odds ratio, 6.3; 95% confidence interval, 2.3–17.8). Although 87% of participants were told their relative was likely to die, only 63% were informed about what to expect during the dying phase. Conclusion. This is the first study assessing quality of care for dying cancer patients from the bereaved relatives’ perspective across several countries on two continents. Our findings suggest many elements of good care were practiced but improvement in communication with relatives of imminently dying patients is needed. (ClinicalTrials.gov Identifier: NCT03566732).
- 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(Sage Journals, 2019) Mayland, C.R. (Catriona Rachel); Gerlach, C. (Christina); Haugen, D.F. (Dagny Faksvåg); Tripodoro, V.A. (Vilma A.); Weber, M. (Martin); Leppert, W. (Wojciech); Passarini, J.N. (Juliana Nalin); Zambon, L. (Lair); Stachowiak, A. (Andrzej); García-Yanneo, E. (Eduardo); Saad, I.B. (Ivete Bredda); Sigurdardottir, K. (Katrin); Ellershaw, J. (John); Goldraij, G. (Gabriel); Krajewska, M. (Maria ); Tuen-Hansen, M.I. (Marit Irene)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.
- Más allá de la orden de no resucitar(Gobierno de Navarra, 2017) Noguera, A. (Antonio); Rojí, R. (Rocío); Centeno, C. (Carlos); Salas, D. (David)En la práctica clínica en un hospital sigue costando interpretar qué significa la orden de no resucitar (ONR). A veces es solo eso, no intentar maniobras de resucitación en caso de una parada cardiorrespiratoria. Otras parece que es la expresión de no tomar más medidas que las paliativas. Y a veces, que se deberían hacer todos los procedimientos y maniobras terapéuticas, salvo intubar al paciente.