RT Journal Article
T1 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
A1 Yildiz, Berivan
A1 Allan, Simon
A1 Bakan, Misa
A1 Barnestein-Fonseca, Pilar
A1 Berger, Michael
A1 Boughey, Mark
A1 Christen, Andri
A1 De Simone, Gustavo G.
A1 Egloff, Martina
A1 Ellershaw, John
A1 Elsten, Eline E. C. M.
A1 Eychmuller, Steffen
A1 Fischer, Claudia
A1 Furst, Carl Johan
A1 Geijteman, Eric C. T.
A1 Goldraij, Gabriel
A1 Goossensen, Anne
A1 Halfdanardottir, Svandis Iris
A1 Haugen, Dagny Faksvag
A1 Hedman, Christel
A1 Hoppe, Tanja
A1 Hughes, Rosemary
A1 Iversen, Grethe Skorpen
A1 Joshi, Melanie
A1 Kodba-Ceh, Hana
A1 Korfage, Ida J.
A1 Lunder, Urska
A1 Luthi, Nora
A1 Martin-Rosello, Maria Luisa
A1 Mason, Stephen
A1 McGlinchey, Tamsin
A1 Montilla, Silvi
A1 Rasmussen, Birgit H.
A1 Ruiz-Torreras, Inmaculada
A1 Schelin, Maria E. C.
A1 Sigurdardottir, Katrin Ruth
A1 Sigurdardottir, Valgerdur
A1 Simon, Judith
A1 Smeding, Ruthmarijke
A1 Solvag, Kjersti
A1 Strupp, Julia
A1 Tripodoro, Vilma
A1 van der Kuy, Hugo M.
A1 van der Rijt, Carin C. D.
A1 van Zuylen, Lia
A1 Veloso, Veronica, I
A1 Vibora-Martin, Eva
A1 Voltz, Raymond
A1 Zambrano, Sofia C.
A1 van der Heide, Agnes
K1 palliative care
K1 public health
K1 adult palliative care
K1 Quality-of-life
K1 Palliative care
K1 Cancer-patients
K1 Terminally-ill
K1 End
K1 Questionnaire
K1 Perceptions
K1 Perspective
K1 Adaptation
K1 Validation
AB 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.
PB Bmj publishing group
SN 2044-6055
YR 2022
FD 2022-08-01
LK http://hdl.handle.net/10668/20139
UL http://hdl.handle.net/10668/20139
LA en
DS RISalud
RD Apr 7, 2025