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

• Published in: BMJ open Vol. 12; no. 8; p. e057229
• Main Authors: Yildiz, Berivan, 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, Eychmüller, Steffen, Fischer, Claudia, Fürst, Carl Johan, Geijteman, Eric C T, Goldraij, Gabriel, Goossensen, Anne, Halfdanardottir, Svandis Iris, Haugen, Dagny Faksvåg, Hedman, Christel, Hoppe, Tanja, Hughes, Rosemary, Iversen, Grethe Skorpen, Joshi, Melanie, Kodba-Ceh, Hana, Korfage, Ida J, Lunder, Urska, Lüthi, Nora, Martín-Roselló, Maria Luisa, Mason, Stephen, McGlinchey, Tamsin, Montilla, Silvi, Rasmussen, Birgit H, Ruiz-Torreras, Inmaculada, Schelin, Maria E C, Sigurdardottir, Katrin Ruth, Sigurdardottir, Valgerdur, Simon, Judit, Smeding, Ruthmarijke, Solvåg, Kjersti, Strupp, Julia, Tripodoro, Vilma, van der Kuy, Hugo M, van der Rijt, Carin C D, van Zuylen, Lia, Veloso, Verónica I, Vibora-Martin, Eva, Voltz, Raymond, Zambrano, Sofia C, van der Heide, Agnes
• Format: Journal Article
• Language: English
• Published: London British Medical Journal Publishing Group 01.08.2022; BMJ Publishing Group LTD; BMJ Publishing Group
• Series: Protocol
• Subjects: adult; adult palliative care; Age; bereavement; Cohort analysis; controlled study; Death & dying; female; follow up; Gender; Health care; Health Care Service and Management, Health Policy and Services and Health Economy; health care utilization; Health Sciences; human; Hälso- och sjukvårdsorganisation, hälsopolitik och hälsoekonomi; Hälsovetenskap; Informed consent; institutional review; interview; Life expectancy; major clinical study; male; Medical and Health Sciences; Medicin och hälsovetenskap; Multiculturalism & pluralism; Nursing; Omvårdnad; Palliative Care; palliative therapy; Patients; Physicians; Population; public health; questionnaire; Questionnaires; relative; terminally ill patient; United Kingdom > UK
• ISSN: 2044-6055; 2044-6055
• DOI: 10.1136/bmjopen-2021-057229

IntroductionAdequately 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 analysisThe 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 disseminationThe 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 numberNCT04271085.