Yildiz, Berivan ORCID: 0000-0002-2385-213X, Allan, Simon, Bakan, Misa, Barnestein-Fonseca, Pilar, Berger, Michael, Boughey, Mark, Christen, Andri, De Simone, Gustavo G., Egloff, Martina, Ellershaw, John, Elsten, Eline E. C. M., Eychmuller, Steffen, Fischer, Claudia, Furst, Carl Johan, Geijteman, Eric C. T., Goldraij, Gabriel, Goossensen, Anne, Halfdanardottir, Svandis Iris, Haugen, Dagny Faksvag, Hedman, Christel, Hoppe, Tanja, Hughes, Rosemary, Iversen, Grethe Skorpen, Joshi, Melanie, Kodba-Ceh, Hana, Korfage, Ida J., Lunder, Urska, Luthi, Nora, Martin-Rosello, Maria Luisa, Mason, Stephen ORCID: 0000-0002-4020-6869, McGlinchey, Tamsin, Montilla, Silvi, Rasmussen, Birgit H., Ruiz-Torreras, Inmaculada, Schelin, Maria E. C., Sigurdardottir, Katrin Ruth, Sigurdardottir, Valgerdur, Simon, Judith, Smeding, Ruthmarijke, Solvag, Kjersti, Strupp, Julia, Tripodoro, Vilma, van der Kuy, Hugo M., van der Rijt, Carin C. D., van Zuylen, Lia, Veloso, Veronica, I, Vibora-Martin, Eva, Voltz, Raymond, Zambrano, Sofia C. and van der Heide, Agnes (2022). 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. BMJ Open, 12 (8). LONDON: BMJ PUBLISHING GROUP. ISSN 2044-6055

Full text not available from this repository.

Abstract

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.

Item Type: Journal Article
Creators:
CreatorsEmailORCIDORCID Put Code
Yildiz, BerivanUNSPECIFIEDorcid.org/0000-0002-2385-213XUNSPECIFIED
Allan, SimonUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Bakan, MisaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Barnestein-Fonseca, PilarUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Berger, MichaelUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Boughey, MarkUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Christen, AndriUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
De Simone, Gustavo G.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Egloff, MartinaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Ellershaw, JohnUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Elsten, Eline E. C. M.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Eychmuller, SteffenUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Fischer, ClaudiaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Furst, Carl JohanUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Geijteman, Eric C. T.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Goldraij, GabrielUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Goossensen, AnneUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Halfdanardottir, Svandis IrisUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Haugen, Dagny FaksvagUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Hedman, ChristelUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Hoppe, TanjaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Hughes, RosemaryUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Iversen, Grethe SkorpenUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Joshi, MelanieUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Kodba-Ceh, HanaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Korfage, Ida J.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Lunder, UrskaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Luthi, NoraUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Martin-Rosello, Maria LuisaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Mason, StephenUNSPECIFIEDorcid.org/0000-0002-4020-6869UNSPECIFIED
McGlinchey, TamsinUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Montilla, SilviUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Rasmussen, Birgit H.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Ruiz-Torreras, InmaculadaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Schelin, Maria E. C.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Sigurdardottir, Katrin RuthUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Sigurdardottir, ValgerdurUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Simon, JudithUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Smeding, RuthmarijkeUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Solvag, KjerstiUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Strupp, JuliaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Tripodoro, VilmaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
van der Kuy, Hugo M.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
van der Rijt, Carin C. D.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
van Zuylen, LiaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Veloso, Veronica, IUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Vibora-Martin, EvaUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Voltz, RaymondUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
Zambrano, Sofia C.UNSPECIFIEDUNSPECIFIEDUNSPECIFIED
van der Heide, AgnesUNSPECIFIEDUNSPECIFIEDUNSPECIFIED
URN: urn:nbn:de:hbz:38-696406
DOI: 10.1136/bmjopen-2021-057229
Journal or Publication Title: BMJ Open
Volume: 12
Number: 8
Date: 2022
Publisher: BMJ PUBLISHING GROUP
Place of Publication: LONDON
ISSN: 2044-6055
Language: English
Faculty: Unspecified
Divisions: Unspecified
Subjects: no entry
Uncontrolled Keywords:
KeywordsLanguage
QUALITY-OF-LIFE; PALLIATIVE CARE; CANCER-PATIENTS; TERMINALLY-ILL; END; QUESTIONNAIRE; PERCEPTIONS; PERSPECTIVE; ADAPTATION; VALIDATIONMultiple languages
Medicine, General & InternalMultiple languages
URI: http://kups.ub.uni-koeln.de/id/eprint/69640

Downloads

Downloads per month over past year

Altmetric

Export

Actions (login required)

View Item View Item