Recruitment, follow-up and survival in an 11-country cohort study of patients at the end of life and their relatives.

Background: Large, international cohort studies generate high-level evidence, but are resource intense. In end-of-life care such studies are scarce. Hence, planning for future studies in terms of data on screening, recruitment, retention and survival remains a challenge.

Comprehensive scoping review of palliative care development in Africa: recent advances and persistent gaps.

Worldwide 56·8 million people need palliative care (PC), and Africa shows the highest demand. This study updates the 2017 review of African PC development, using a scoping review methodology based on Arksey and O'Malley's framework and the PRISMA-ScR checklist. The review was conducted across PUBMED, CINAHL, Embase, government websites, and the African PC Association Atlas, from 2017 to 2023, charting its progress using the new WHO framework for PC Development, which, in addition to Services, Education, Medicines, and Policies, two new dimensions were incorporated: Research and Empowerment of people and Communities.

A core outcome set for best care for the dying person: Results of an international Delphi study and consensus meeting.

Background: Outcome measurement is essential to progress clinical practice and improve patient care.

Aim: To develop a Core Outcome Set for best care for the dying person.

Design: We followed the Core Outcome Measures in Effectiveness Trials (COMET) Initiative guidelines, which involved identifying potential outcomes via a systematic literature review (n = 619 papers) and from participants in the "iLIVE" project (10 countries: 101 patients, 37 family members, 63 clinicians), followed by a two-round Delphi study, and a consensus meeting.

Implementing the WHO Indicators for Assessing Palliative Care Development in Three Countries: A Do-It-Yourself Approach.

Context: Palliative care is an essential health service, with over 56.8 million people needing it yearly, particularly in low- and middle-income countries. The World Health Assembly has recognized palliative care as an ethical responsibility and called for comprehensive primary health care.

Dealing With Temporality in Patients With Life-Limiting Disease: An International Qualitative Study.

The prospect of death influences people's thoughts about and how they deal with their remaining time. We aimed to understand whether patients with progressive, life-limiting diseases are oriented in the past, present, or future and how they deal with temporality. We conducted 57 in-depth interviews with end-of-life patients in 10 countries using thematic analysis at three levels (i.

From static snapshots to dynamic panoramas: the evolution and future vision of palliative care atlas in cross-national perspectives.

Palliative care is essential to global health services as it improves the quality of life of patients, their families and caregivers. The ATLANTES Global Observatory of Palliative Care (University of Navarra) was created a decade ago to promote a positive attitude towards patients with advanced illness in society and medicine. To do so, and over the past 15 years, ATLANTES has mapped palliative care data worldwide using public health, macro and comparative perspectives in different atlases.

[Perceived self-efficacy scale on shared care planning (ACP-SEs) Argentina].

Introduction: Shared care planning (ACP) is a reflective, deliberative and structured process involving the sick person and his or her caring environment. Health professionals recognize barriers to initiating ACP.Perceived self-efficacy is one of the main predictors of success in learning processes.

'Someone must do it': multiple views on family's role in end-of-life care - an international qualitative study.

Background: Family is a crucial social institution in end-of-life care. Family caregivers are encouraged to take on more responsibility at different times during the illness, providing personal and medical care. Unpaid work can be overburdening, with women often spending more time in care work than men.

Palliative care progress in Benin: a situation analysis using the WHO development indicators.

Context: Palliative care (PC) in most African countries remains under-assessed. Benin has piloted the implementation of a set of indicators proposed by the WHO to measure PC development.

Objectives: To examine the current status of PC in Benin.

Economic impact of informal care of cancer patients at the end of life.

Background: Economic analysis of the incorporation of palliative care (PC) programs allows for assessment of the potential financial impact of shifting activity from secondary care to primary, community and social care sectors. Only 14% of patients in need of PC in Argentina have access to PC services, similar to the world average, as estimated by World Health Organization (WHO). The economic impact of family care, which falls mainly on women, needs to be assessed at the public policy and research levels.

Enhancing Global Development of Palliative Care: Insights from Country Experts on ATLANTES Observatory's Role.

Despite a steady increase in palliative care (PC)-oriented research, authentic engagement of stakeholders with findings needs to be more used. This study aimed to explore how ATLANTES Observatory can effectively promote the global development of PC by engaging with stakeholders and addressing their specific needs and priorities. An international e-survey among Observatory collaborators explored key audiences, best ways to reach them, and priority activities.

How should Argentina raise Advance Care Planning awareness? Introduction of the Shared Care Planning Group.

The WHO Concept Model of Palliative Care emphasises empowering people and communities with Advance Care Planning (ACP). In Latin America, a more relational approach involving family members is suited to ACP. Improvements in doctor-patient-family relationships are needed.

Compassionate communities: How to assess their benefit? A protocol of a collaborative study between different countries.

Background: Communities and local governments invest in compassionate communities (CCs) a great deal of time, money, effort, and work. However, it is not known whether the CCs are having the effect they are expected to have, so the value of continuing with these initiatives is unknown, and there is a need for a model for evaluating CCs to solve the question.

Objectives: To identify a set of core outcomes or benefits that should be measured to assess the impact of the CCs.

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.

[Cost-effectiveness analysis of palliative care of cancer patients in the end of life].

Home palliative care services of terminal patients may associate home care preferences with desirable health outcomes. This study aimed to evaluate the cost-effectiveness of home palliative care of cancer patients in the last year of life in the public health subsector in a province of Argentina. A cost-effectiveness Markov model was developed from a social and the health funder's perspective in order to reflect the reality of home palliative care at the local level compared with usual care.

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.

Place of death and associated factors in 12 Latin American countries: A total population study using death certificate data.

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 observational study using death certificates of the total annual decedent populations in 12 countries (Argentina, Brazil, Chile, Colombia, Costa Rica, El Salvador, Guatemala, Ecuador, Mexico, Paraguay, Peru, and Uruguay) for the most recent available year (2016, 2017, or 2018).

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.

Feasibility of using death certificates for studying place of death in Latin America.

Objective: This paper assesses the availability and quality of death certificate data in Latin America and the feasibility of using these data to study place of death and associated factors.

Methods: In this comparative study, we collected examples of current official death certificates and digital data files containing information about all deaths that occurred during 1 year in 19 Latin American countries. Data were collected from June 2019 to May 2020.

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).

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.

Good Quality Care for Cancer Patients Dying in Hospitals, but Information Needs Unmet: Bereaved Relatives' Survey within Seven Countries.

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.

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.

[The Care as a minimum necessary change to transform the healthcare system].

Introduction: This article assumes a critical reflection as a personal suggestion to include the dimension of care in healthcare system. The discussion is contextualized in the epidemiological transitions of the 21st Century framework, chronicity, longevity and increasing dependence.

Methods: An experimental metaphor for manipulating the genome constituting healthcare systems, based on principles of universality, accessibility, solidarity, ethics, efficacy and efficiency, is held to achieve the minimum necessary change to transform them in favour of humanization, empathy and compassion.