BMJ Open (Aug 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
- Birgit H Rasmussen,
- Vilma Tripodoro,
- Gabriel Goldraij,
- John Ellershaw,
- Stephen Mason,
- Agnes van der Heide,
- Carin C D van der Rijt,
- Lia van Zuylen,
- Judit Simon,
- Michael Berger,
- Raymond Voltz,
- Melanie Joshi,
- Claudia Fischer,
- Katrin Ruth Sigurdardottir,
- Julia Strupp,
- Berivan Yildiz,
- Valgerdur Sigurdardottir,
- Hugo M van der Kuy,
- Steffen Eychmüller,
- Simon Allan,
- Rosemary Hughes,
- Tamsin Mcglinchey,
- Ida J Korfage,
- Carl Johan Fürst,
- Anne Goossensen,
- Mark Boughey,
- Dagny Faksvåg Haugen,
- Urska Lunder,
- Pilar Barnestein-Fonseca,
- Misa Bakan,
- Andri Christen,
- Gustavo G De Simone,
- Martina Egloff,
- Eline E C M Elsten,
- Eric C T Geijteman,
- Svandis Iris Halfdanardottir,
- Christel Hedman,
- Tanja Hoppe,
- Grethe Skorpen Iversen,
- Hana Kodba-Ceh,
- Nora Lüthi,
- Maria Luisa Martín-Roselló,
- Silvi Montilla,
- Inmaculada Ruiz-Torreras,
- Maria E C Schelin,
- Ruthmarijke Smeding,
- Kjersti Solvåg,
- Verónica I Veloso,
- Eva Vibora-Martin,
- Sofia C Zambrano
Affiliations
- Birgit H Rasmussen
- Institute for Palliative Care at Lund University and Region Skåne, Lund University, Lund, Sweden
- Vilma Tripodoro
- Research Network RED-InPal, Institute Pallium Latinoamérica, Buenos Aires, Argentina
- Gabriel Goldraij
- Internal Medicine/Palliative Care Program, Hospital Privado Universitario de Córdoba, Cordoba, Argentina
- John Ellershaw
- Palliative Care Unit, Institute of Life Course and Medical Sciences, University of Liverpool, Liverpool, UK
- Stephen Mason
- Palliative Care Unit, Institute of Life Course and Medical Sciences, University of Liverpool, Liverpool, UK
- Agnes van der Heide
- Department of Public Health, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands
- Carin C D van der Rijt
- Department of Medical Oncology, Erasmus MC Cancer Institute, Erasmus MC University Medical Center Rotterdam, Rotterdam, The Netherlands
- Lia van Zuylen
- Department of Medical Oncology, Amsterdam University Medical Center, Amsterdam, The Netherlands
- Judit Simon
- Department of Health Economics, Medical University of Vienna, Wien, Austria
- Michael Berger
- Department of Health Economics, Center for Public Health, Medical University of Vienna, Wien, Austria
- Raymond Voltz
- Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
- Melanie Joshi
- Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
- Claudia Fischer
- Department of Health Economics, Center for Public Health, Medical University of Vienna, Wien, Austria
- Katrin Ruth Sigurdardottir
- Regional Centre of Excellence for Palliative Care, Haukeland University Hospital, Western Norway, Bergen, Norway
- Julia Strupp
- Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
- Berivan Yildiz
- Department of Public Health, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands
- Valgerdur Sigurdardottir
- Palliative Care Unit, Landspitali - National University Hospital, Reykjavik, Iceland
- Hugo M van der Kuy
- Department of Clinical Pharmacy, Erasmus MC, University Medical Center, Rotterdam, The Netherlands
- Steffen Eychmüller
- University Center for Palliative Care, Inselspital University Hospital Bern, University of Bern, Bern, Switzerland
- Simon Allan
- Arohanui Hospice, Palmerston North, New Zealand
- Rosemary Hughes
- Palliative Care Unit, Institute of Life Course and Medical Sciences, University of Liverpool, Liverpool, UK
- Tamsin Mcglinchey
- Palliative Care Unit, Institute of Life Course and Medical Sciences, University of Liverpool, Liverpool, UK
- Ida J Korfage
- Department of Public Health, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands
- Carl Johan Fürst
- Institute for Palliative Care at Lund University and Region Skåne, Lund University, Lund, Sweden
- Anne Goossensen
- Informal Care and Care Ethics, University of Humanistic Studies, Utrecht, The Netherlands
- Mark Boughey
- Department of Palliative Care, St Vincent`s Hospital Melbourne, Fitzroy, Victoria, Australia
- Dagny Faksvåg Haugen
- Regional Centre of Excellence for Palliative Care, Haukeland University Hospital, Western Norway, Bergen, Norway
- Urska Lunder
- Research Department, University Clinic of Respiratory and Allergic Diseases Golnik, Golnik, Slovenia
- Pilar Barnestein-Fonseca
- CUDECA Institute for Training and Research in Palliative Care, CUDECA Hospice Foundation, Malaga, Spain
- Misa Bakan
- Research Department, University Clinic of Respiratory and Allergic Diseases Golnik, Golnik, Slovenia
- Andri Christen
- University Center for Palliative Care, Inselspital University Hospital Bern, University of Bern, Bern, Switzerland
- Gustavo G De Simone
- Research Network RED-InPal, Institute Pallium Latinoamérica, Buenos Aires, Argentina
- Martina Egloff
- University Center for Palliative Care, Inselspital University Hospital Bern, University of Bern, Bern, Switzerland
- Eline E C M Elsten
- Department of Public Health, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands
- Eric C T Geijteman
- Department of Public Health, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands
- Svandis Iris Halfdanardottir
- Palliative Care Unit, Landspitali - National University Hospital, Reykjavik, Iceland
- Christel Hedman
- Institute for Palliative Care at Lund University and Region Skåne, Lund University, Lund, Sweden
- Tanja Hoppe
- Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
- Grethe Skorpen Iversen
- Regional Centre of Excellence for Palliative Care, Haukeland University Hospital, Western Norway, Bergen, Norway
- Hana Kodba-Ceh
- Research Department, University Clinic of Respiratory and Allergic Diseases Golnik, Golnik, Slovenia
- Nora Lüthi
- University Center for Palliative Care, Inselspital University Hospital Bern, University of Bern, Bern, Switzerland
- Maria Luisa Martín-Roselló
- CUDECA Institute for Training and Research in Palliative Care, CUDECA Hospice Foundation, Malaga, Spain
- Silvi Montilla
- Institute of Medical Research A. Lanari, University of Buenos Aires, Buenos Aires, Argentina
- Inmaculada Ruiz-Torreras
- CUDECA Institute for Training and Research in Palliative Care, CUDECA Hospice Foundation, Malaga, Spain
- Maria E C Schelin
- Institute for Palliative Care at Lund University and Region Skåne, Lund University, Lund, Sweden
- Ruthmarijke Smeding
- Palliative Care Unit, Institute of Life Course and Medical Sciences, University of Liverpool, Liverpool, UK
- Kjersti Solvåg
- Regional Centre of Excellence for Palliative Care, Haukeland University Hospital, Western Norway, Bergen, Norway
- Verónica I Veloso
- Institute of Medical Research A. Lanari, University of Buenos Aires, Buenos Aires, Argentina
- Eva Vibora-Martin
- CUDECA Institute for Training and Research in Palliative Care, CUDECA Hospice Foundation, Malaga, Spain
- Sofia C Zambrano
- University Center for Palliative Care, Inselspital University Hospital Bern, University of Bern, Bern, Switzerland
- DOI
- https://doi.org/10.1136/bmjopen-2021-057229
- Journal volume & issue
-
Vol. 12,
no. 8
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.Trial registration number NCT04271085.
