Living well, dying well. A research programme to support living until the end

Projektinformationen

iLIVE

ID Finanzhilfevereinbarung: 825731

DOI

10.3030/825731

Projekt abgeschlossen

EK-Unterschriftsdatum 10 Dezember 2018

Startdatum 1 Januar 2019

Enddatum 31 Dezember 2023

Finanziert unter

• SOCIETAL CHALLENGES - Health, demographic change and well-being

Gesamtkosten

€ 4 108 817,50

EU-Beitrag

€ 4 017 817,50

Koordiniert durch

ERASMUS UNIVERSITAIR MEDISCH CENTRUM ROTTERDAM
Netherlands

CORDIS bietet Links zu öffentlichen Ergebnissen und Veröffentlichungen von HORIZONT-Projekten.

Links zu Ergebnissen und Veröffentlichungen von RP7-Projekten sowie Links zu einigen Typen spezifischer Ergebnisse wie Datensätzen und Software werden dynamisch von OpenAIRE abgerufen.

Leistungen

Documents, reports (28)

Report on the scoping literature review of economic evaluations and value frameworks in end-of-life care

A report on a literature review on costeffectiveness analyses in palliative care..

An overview of the effects of the volunteer programme on the experience of dying and quality of care as perceived by patients and families

A report on the main outcomes of the volunteer study.

At least one submitted paper and abstract for conference on the medication study

A scientific paper and abstract on the outcomes of the medication study.

One submitted paper and abstract for conference on COS development

One scientific paper and abstract on the COS development.

A COS for care of dying patients

The validated Core Outcome Set for care of dying patients.

Guidance for the integration of the tool in electronic medical file systems

A description of how to integrate the tool in electronic patient file systems.

Report on five local culturally adapted Asset Based Community Development Care of the Dying Volunteer Services

A report on five culturally adapted asset based community development of care for the dying.

An overview of factors that influence the implementation and impact of a hospital volunteer service for dying patients

A report on the process of implementing a volunteer service in hospitals.

Report on the cost-effectiveness of the medication tool

A report on the costeffectiveness of the medication tool.

An overview of characteristics of the cohort population

Report describing the characteristics of the study participants.

At least one submitted paper and abstract for conference on cost-effectiveness

A scientific paper and abstract on the outcomes of the costeffectiveness study.

A report on outcomes regarding cultural norms in end-of-life care of interviews and focus groups

A report on cultural variance in outcomes of the qualitative interviews and focus groups.

An overview of the outcomes of the medication study

A report that describes the main outcomes of the medication study.

An overview of the qualitative study outcomes of the cohort study

Report in which the outcomes of the qualitative interviews that are party of the cohort study are described

A framework for an international quality registry for end-of-life care

A report with advice on how to use the COS for registration and benchmarking.

One submitted paper and abstract on issues in recruitment, follow-up and data collection for an international cohort study in the area of end-of-life care

One scientific paper and abstract on data collection processes in the project.

At least one submitted paper and abstract for conference on the cohort study

A paper and abstract on the main outcomes of the cohort study.

An overview of the experiences of physicians with using the medication tool

A report that describes the experiences of physicians with using the medication tool.

An overview of the quantitative study outcomes of the cohort study

Report describing the main outcomes of the cohort study.

An explorative overview of the effect of the volunteer programme on care of dying patients and their families as perceived by health care professionals and volunteers

A report on the experiences with collaboration with volunteers among health care professionals and volunteers.

Report about ethical issues in the recruitment and follow-up of patients and family members

A report about ethical issues in the recruitment and follow-up of patient and families in the cohort study.

Report on the cost-effectiveness of the volunteer training programme

A report on the costeffectiveness of the volunteer programme.

Eight project newsletters

Regular newsletters to present the project to the outside world.

At least one submitted paper and abstract for conference on the volunteer study

A scientific paper and abstract on the outcomes of the volunteer study.

At least one submitted paper and abstract for conference on cultural variety

One scientific paper and abstract on ethical values in end-of-life care.

An overview of the qualitative study outcomes of the medication study

A report describing the outcomes of the qualitative interviews that are part of the medication study

One submitted paper and abstract for conference on public engagement/citizen input

One scientific paper and abstract on public engagement during the project.

Policy report on citizen input during the project

A report on how the general public was engaged during the project.

Websites, patent fillings, videos etc. (2)

Training programme on using the medication tool

A brief description and training module to train doctors how to use the meciationtool.

Project website

A website for internal and external communication about the project.

Other (3)

Scientific conference and policy summit

A conference and summit to discuss the outcomes of the project and their implementation.

A digital clinical tool to optimize medication management in the last phase of life to be tested in the trial

The preliminary version of a digital tool to optimize medication management.

A validated digital clinical tool to optimize mediation management in the last phase of life

A validated version of the digital medication tool.

Veröffentlichungen

Peer reviewed articles (14)

Healthcare professionals’ perspectives on assessing selected patient-reported outcome measures in specialist palliative care institutions: a multi-country mixed-methods study

Autoren: Elisabeth Saly, Judit Simon, Claudia Fischer
Veröffentlicht in: BMC Palliative Care, Ausgabe 24, 2025, ISSN 1472-684X
Herausgeber: BioMed Central
DOI: 10.1186/s12904-025-01775-6

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

Autoren: Sofia C. Zambrano, Martina Egloff, Valentina Gonzalez-Jaramillo, Andri Christen-Cevallos Rosero, Simon Allan, Pilar Barnestein-Fonseca, John Ellershaw, Claudia Fischer, Dagny Faksvåg Haugen, Urška Lunder, Marisa Martin-Rosello, Stephen Mason, Birgit Rasmussen, Valgerdur Sigurðardóttir, Judt Simon, Vilma A. Tripodoro, Agnes van der Heide, Lia van Zuylen, Raymond Voltz, Carl Johan Fürst, Paula
Veröffentlicht in: Palliative Medicine, Ausgabe 39, 2024, Seite(n) 163-175, ISSN 0269-2163
Herausgeber: SAGE Publications
DOI: 10.1177/02692163241300867

Methodological aspects of economic evaluations conducted in the palliative or end of life care settings: a systematic review protocol

Autoren: Claudia Fischer, Eva Chwala, Judit Simon
Veröffentlicht in: BMJ Open, Ausgabe 2020;10:e035760, 2020, ISSN 2044-6055
Herausgeber: BMJ Publishing Group
DOI: 10.1136/bmjopen-2019-035760

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

Autoren: Sofia C. Zambrano, Dagny Faksvåg Haugen, Agnes van der Heide, Vilma A. Tripodoro, John Ellershaw, Carl Johan Fürst, Raymond Voltz, Stephen Mason, María L. Daud, Gustavo De Simone, Kerstin Kremeike, Svandis Iris Halfdanardottir, Valgerdur Sigurdardottir, Jeremy Johnson, Simon Allan, Haroon Hafeez, Catarina Simões, Katrin Ruth Sigurdardottir, Birgit H. Rasmussen, Paula Williamson, Steffen Eychm
Veröffentlicht in: BMC Palliative Care, Ausgabe 19, Article number: 184 (2020), 2020, ISSN 1472-684X
Herausgeber: BioMed Central
DOI: 10.1186/s12904-020-00654-6

iLIVE volunteer study: Volunteer and healthcare professional perceptions of newly developed hospital end-of-life-care volunteer services, in five countries

Autoren: Tamsin McGlinchey, Stephen Mason, Grethe Skorpen Iversen, Dagny Faksvåg Haugen, Inmaculada Ruiz Torreras, Pilar Barnestein Fonseca, Miša Bakan, Berivan Yildiz, Ruthmarijke Smeding, Anne Goossensen, Agnes van der Heide, John Ellershaw
Veröffentlicht in: Palliative Medicine, 2025, ISSN 0269-2163
Herausgeber: SAGE Publications
DOI: 10.1177/02692163251328197

Updating international consensus on best practice in care of the dying: A Delphi study

Autoren: McGlinchey T, Early R, Mason S, Johan-Fürst C, van Zuylen L, Wilkinson S, Ellershaw J.
Veröffentlicht in: Palliative Medicine, Ausgabe Mar;37(3), 2023, Seite(n) 329-342, ISSN 0269-2163
Herausgeber: SAGE Publications
DOI: 10.1177/02692163231152523

Corrigendum to “McGlinchey T, Mason S, Skorpen Iversen G, et al. iLIVE volunteer study: Volunteer and healthcare professional perceptions of newly developed hospital end-of-life-care volunteer services, in five countries. <i>Palliative Medicine</i> . 2025;0(0). doi:10.1177/02692163251328197”

Autoren: no authors
Veröffentlicht in: Palliative Medicine, Ausgabe 2025 Jul 12:, 2025, Seite(n) 2692163251360181, ISSN 0269-2163
Herausgeber: SAGE Publications
DOI: 10.1177/02692163251360181

Facilitators and barriers of implementing end-of-life care volunteering in a hospital in five European countries: the iLIVE study

Autoren: Yildiz B, van der Heide A, Bakan M, Iversen GS, Haugen DF, McGlinchey T, Smeding R, Ellershaw J, Fischer C, Simon J, Vibora-Martin E, Ruiz-Torreras I, Goossensen A; iLIVE consortium
Veröffentlicht in: BMC Palliat Care, Ausgabe Apr 2;23(1):, 2024, Seite(n) 88, ISSN 1472-684X
Herausgeber: BioMed Central
DOI: 10.1186/s12904-024-01423-5

ILIVE Project Volunteer study. Developing international consensus for a European Core Curriculum for hospital end-of-life-care volunteer services, to train volunteers to support patients in the last weeks of life: A Delphi study

Autoren: Tamsin McGlinchey, Stephen R Mason, Ruthmarijke Smeding, Anne Goosensen, Inmaculada Ruiz-Torreras, Dagny Faksvåg Haugen, Miša Bakan, John E Ellershaw
Veröffentlicht in: Palliative Medicine, Ausgabe October 20, 2021, ISSN 0269-2163
Herausgeber: SAGE Publications
DOI: 10.1177/02692163211045305

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

Autoren: Melanie Joshi, Guðlaug Helga Ásgeirsdóttir, Miša Bakan, Hana Kodba Čeh, Dagny Renata Faksvåg Haugen, Urška Lunder, Eva Víbora Martín, Beth Morris, Birgit H. Rasmussen, Elisabeth Romarheim, Vilma Tripodoro, Agnes van der Heide, Verónica Veloso, Berivan Yildiz, Sofía Zambrano, Julia Strupp, Raymond Voltz, null null
Veröffentlicht in: Qualitative Health Research, Ausgabe Aug 26, 2024, ISSN 1049-7323
Herausgeber: SAGE Publications
DOI: 10.1177/10497323241263751

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

Autoren: Maria E. C. Schelin, Christel Hedman, Pilar Barnestein-Fonseca, Martina Egloff, John Ellershaw, Dagny Faksvåg Haugen, Claudia Fischer, Melanie Joshi, Ida J. Korfage, Urška Lunder, Stephen Mason, Judit Simon, Vilma A. Tripodoro, Berivan Yildiz, Sofia C. Zambrano, Steffen Eychmueller, Lia van Zuylen, Agnes van der Heide, Carl Johan Fürst, null null
Veröffentlicht in: PLOS ONE, Ausgabe 20, 2025, Seite(n) e0317002, ISSN 1932-6203
Herausgeber: Public Library of Science
DOI: 10.1371/journal.pone.0317002

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

Autoren: Vilma A. Tripodoro, Verónica I. Veloso, Eva Víbora Martín, Hana Kodba-Čeh, Miša Bakan, Birgit H. Rasmussen, Sofía C. Zambrano, Melanie Joshi, Svandis Íris Hálfdánardóttir, Guðlaug Helga Ásgeirsdóttir, Elisabeth Romarheim, Dagny Faksvåg Haugen, Tamsin McGlinchey, Berivan Yildiz, Pilar Barnestein-Fonseca, Anne Goossensen, Urška Lunder, Agnes van der Heide
Veröffentlicht in: Palliative Care and Social Practice, Ausgabe 18, 2024, ISSN 2632-3524
Herausgeber: SAGE
DOI: 10.1177/26323524241260425

Live well, die well – an international cohort study on experiences, concerns and preferences of patients in the last phase of life: the research protocol of the iLIVE study

Autoren: Berivan Yildiz, Simon Allan, Misa Bakan, Pilar Barnestein-Fonseca, Michael Berger, Mark Boughey, Andri Christen Gustavo G De Simone, Martina Egloff, John Ellershaw, Eline E C M Elsten, Steffen Eychmüller, Claudia Fischer, Carl Johan Fürst, Eric C T Geijteman, Gabriel Goldraij, Anne Goossensen, Svandis Iris Halfdanardottir, Dagny Faksvåg Haugen, Christel Hedman, Tanja Hoppe, Rosemary Hughes, Gre
Veröffentlicht in: BMJ Open, Ausgabe 2022;12:e057229, 2022, Seite(n) e057229, ISSN 2044-6055
Herausgeber: BMJ Publishing Group
DOI: 10.1136/bmjopen-2021-057229

Barriers and drivers of public engagement in palliative care, Scoping review

Autoren: Pilar Barnestein-Fonseca, Alicia Nebro-Gil, Virginia P. Aguiar-Leiva, Eva Víbora-Martín, Inmaculada Ruiz-Torreras, Maria Luisa Martín-Rosello, Agnes van der Heide, Vilma Tripodoro, Verónica I. Veloso, Silvina Montilla, Gustavo G. De Simone, Gabriel Goldraij, Mark Boughey, Michael Berger, Claudia Fischer, Judit Simon, Raymond Voltz, Melanie Joshi, Julia Strupp, Svandis Iris Halfdanardottir, Val
Veröffentlicht in: BMC Palliative Care, Ausgabe 23, 2024, ISSN 1472-684X
Herausgeber: BioMed Central
DOI: 10.1186/s12904-024-01424-4