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

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 HedmanTanja Hoppe, Rosemary Hughes, Grethe Skorpen Iversen, Melanie Joshi, Hana Kodba-Ceh, Ida J. Korfage, Urska Lunder, Nora Lüthi, Maria Luisa Martín-Roselló, Stephen Mason, Tamsin Mcglinchey, Silvi Montilla, Birgit H. Rasmussen, Inmaculada Ruiz-Torreras, Maria E.C. Schelin, Katrin Ruth Sigurdardottir, Valgerdur Sigurdardottir, Judith Simon, Ruthmarijke Smeding, Kjersti Solvåg, Julia Strupp, Vilma Tripodoro, Hugo M. Van Der Kuy, Carin C.D. Van Der Rijt, Lia Van Zuylen, Verónica I. Veloso, Eva Vibora-Martin, Raymond Voltz, Sofia C. Zambrano, Agnes Van Der Heide

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

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Introduction Adequately addressing the needs of patients at the end of life and their relatives is pivotal in preventing unnecessary suffering and optimising their quality of life. The purpose of the iLIVE study is to contribute to high-quality personalised care at the end of life in different countries and cultures, by investigating the experiences, concerns, preferences and use of care of terminally ill patients and their families. Methods and analysis The iLIVE study is an international cohort study in which patients with an estimated life expectancy of 6 months or less are followed up until they die. In total, 2200 patients will be included in 11 countries, that is, 200 per country. In addition, one relative per patient is invited to participate. All participants will be asked to fill in a questionnaire, at baseline and after 4 weeks. If a patient dies within 6 months of follow-up, the relative will be asked to fill in a post-bereavement questionnaire. Healthcare use in the last week of life will be evaluated as well; healthcare staff who attended the patient will be asked to fill in a brief questionnaire to evaluate the care that was provided. Qualitative interviews will be conducted with patients, relatives and healthcare professionals in all countries to gain more in-depth insights. Ethics and dissemination The cohort study has been approved by ethics committees and the institutional review boards (IRBs) of participating institutes in all countries. Results will be disseminated through the project website, publications in scientific journals and at conferences. Within the project, there will be a working group focusing on enhancing the engagement of the community at large with the reality of death and dying. Trial registration number NCT04271085.

Original languageEnglish
Article number057229
Number of pages9
JournalBMJ Open
Issue number8
Publication statusPublished - 5 Aug 2022

Bibliographical note

Funding: This work is supported by the European Union's Horizon 2020 Research and Innovation Programme under Grant agreement no. 825731.

Publisher Copyright: © Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY. Published by BMJ.


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