1. 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
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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 Hedman, Tanja 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, Judit 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, Internal medicine, Public Health, Medical Oncology, Pharmacy, [Yildiz, Berivan] Univ Med Ctr Rotterdam, Dept Publ Hlth, Erasmus MC, Rotterdam, Netherlands, [Elsten, Eline E. C. M.] Univ Med Ctr Rotterdam, Dept Publ Hlth, Erasmus MC, Rotterdam, Netherlands, [Geijteman, Eric C. T.] Univ Med Ctr Rotterdam, Dept Publ Hlth, Erasmus MC, Rotterdam, Netherlands, [Korfage, Ida J.] Univ Med Ctr Rotterdam, Dept Publ Hlth, Erasmus MC, Rotterdam, Netherlands, [van der Heide, Agnes] Univ Med Ctr Rotterdam, Dept Publ Hlth, Erasmus MC, Rotterdam, Netherlands, [Allan, Simon] Arohanui Hosp, Palmerston North, New Zealand, [Bakan, Misa] Univ Clin Resp & Allerg Dis Golnik, Res Dept, Golnik, Slovenia, [Kodba-Ceh, Hana] Univ Clin Resp & Allerg Dis Golnik, Res Dept, Golnik, Slovenia, [Lunder, Urska] Univ Clin Resp & Allerg Dis Golnik, Res Dept, Golnik, Slovenia, [Barnestein-Fonseca, Pilar] CUDECA Hosp Fdn, CUDECA Inst Training & Res Palliat Care, Malaga, Spain, [Martin-Rosello, Maria Luisa] CUDECA Hosp Fdn, CUDECA Inst Training & Res Palliat Care, Malaga, Spain, [Ruiz-Torreras, Inmaculada] CUDECA Hosp Fdn, CUDECA Inst Training & Res Palliat Care, Malaga, Spain, [Vibora-Martin, Eva] CUDECA Hosp Fdn, CUDECA Inst Training & Res Palliat Care, Malaga, Spain, [Barnestein-Fonseca, Pilar] Ibima Inst, Grp C08 Pharma Econ Clin & Econ Evaluat Medicat &, Malaga, Spain, [Berger, Michael] Med Univ Vienna, Ctr Publ Hlth, Dept Hlth Econ, Vienna, Austria, [Fischer, Claudia] Med Univ Vienna, Ctr Publ Hlth, Dept Hlth Econ, Vienna, Austria, [Simon, Judith] Med Univ Vienna, Ctr Publ Hlth, Dept Hlth Econ, Vienna, Austria, [Boughey, Mark] St Vincents Hosp Melbourne, Dept Palliat Care, Fitzroy, Vic, Australia, [Christen, Andri] Univ Bern, Inselspital Univ Hosp Bern, Univ Ctr Palliat Care, Bern, Switzerland, [Egloff, Martina] Univ Bern, Inselspital Univ Hosp Bern, Univ Ctr Palliat Care, Bern, Switzerland, [Eychmuller, Steffen] Univ Bern, Inselspital Univ Hosp Bern, Univ Ctr Palliat Care, Bern, Switzerland, [Luthi, Nora] Univ Bern, Inselspital Univ Hosp Bern, Univ Ctr Palliat Care, Bern, Switzerland, [Zambrano, Sofia C.] Univ Bern, Inselspital Univ Hosp Bern, Univ Ctr Palliat Care, Bern, Switzerland, [De Simone, Gustavo G.] Inst Pallium Latinoamer, Res Network Red InPal, Buenos Aires, DF, Argentina, [Tripodoro, Vilma] Inst Pallium Latinoamer, Res Network Red InPal, Buenos Aires, DF, Argentina, [Ellershaw, John] Univ Liverpool, Inst Life Course & Med Sci, Palliat Care Unit, Liverpool, Merseyside, England, [Hughes, Rosemary] Univ Liverpool, Inst Life Course & Med Sci, Palliat Care Unit, Liverpool, Merseyside, England, [Mason, Stephen] Univ Liverpool, Inst Life Course & Med Sci, Palliat Care Unit, Liverpool, Merseyside, England, [McGlinchey, Tamsin] Univ Liverpool, Inst Life Course & Med Sci, Palliat Care Unit, Liverpool, Merseyside, England, [Smeding, Ruthmarijke] Univ Liverpool, Inst Life Course & Med Sci, Palliat Care Unit, Liverpool, Merseyside, England, [Elsten, Eline E. C. M.] Erasmus MC Univ Med Ctr Rotterdam, Erasmus MC Canc Inst, Dept Med Oncol, Rotterdam, Netherlands, [Geijteman, Eric C. T.] Erasmus MC Univ Med Ctr Rotterdam, Erasmus MC Canc Inst, Dept Med Oncol, Rotterdam, Netherlands, [van der Rijt, Carin C. D.] Erasmus MC Univ Med Ctr Rotterdam, Erasmus MC Canc Inst, Dept Med Oncol, Rotterdam, Netherlands, [Furst, Carl Johan] Lund Univ, Inst Palliat Care, Lund, Sweden, [Hedman, Christel] Lund Univ, Inst Palliat Care, Lund, Sweden, [Rasmussen, Birgit H.] Lund Univ, Inst Palliat Care, Lund, Sweden, [Schelin, Maria E. C.] Lund Univ, Inst Palliat Care, Lund, Sweden, [Furst, Carl Johan] Lund Univ, Reg Skane, Lund, Sweden, [Hedman, Christel] Lund Univ, Reg Skane, Lund, Sweden, [Rasmussen, Birgit H.] Lund Univ, Reg Skane, Lund, Sweden, [Schelin, Maria E. C.] Lund Univ, Reg Skane, Lund, Sweden, [Furst, Carl Johan] Lund Univ, Dept Clin Sci, Div Oncol & Pathol, Lund, Sweden, [Hedman, Christel] Lund Univ, Dept Clin Sci, Div Oncol & Pathol, Lund, Sweden, [Schelin, Maria E. C.] Lund Univ, Dept Clin Sci, Div Oncol & Pathol, Lund, Sweden, [Goldraij, Gabriel] Hosp Privado Univ Cordoba, Internal Med Palliat Care Program, Cordoba, Argentina, [Goossensen, Anne] Univ Humanistic Studies, Informal Care & Care Eth, Utrecht, Netherlands, [Halfdanardottir, Svandis Iris] Landspitali Natl Univ Hosp, Palliat Care Unit, Reykjavik, Iceland, [Sigurdardottir, Valgerdur] Landspitali Natl Univ Hosp, Palliat Care Unit, Reykjavik, Iceland, [Haugen, Dagny Faksvag] Haukeland Hosp, Reg Ctr Excellence Palliat Care, Bergen, Norway, [Iversen, Grethe Skorpen] Haukeland Hosp, Reg Ctr Excellence Palliat Care, Bergen, Norway, [Sigurdardottir, Katrin Ruth] Haukeland Hosp, Reg Ctr Excellence Palliat Care, Bergen, Norway, [Solvag, Kjersti] Haukeland Hosp, Reg Ctr Excellence Palliat Care, Bergen, Norway, [Haugen, Dagny Faksvag] Univ Bergen, Dept Clin Med K1, Bergen, Norway, [Hedman, Christel] Stiftelsen Stockholms Sjukhem, Res Dept, Stockholm, Sweden, [Hoppe, Tanja] Univ Cologne, Fac Med, Dept Palliat Med, Cologne, Germany, [Joshi, Melanie] Univ Cologne, Fac Med, Dept Palliat Med, Cologne, Germany, [Strupp, Julia] Univ Cologne, Fac Med, Dept Palliat Med, Cologne, Germany, [Voltz, Raymond] Univ Cologne, Fac Med, Dept Palliat Med, Cologne, Germany, [Hoppe, Tanja] Univ Cologne, Univ Hosp, Cologne, Germany, [Joshi, Melanie] Univ Cologne, Univ Hosp, Cologne, Germany, [Strupp, Julia] Univ Cologne, Univ Hosp, Cologne, Germany, [Voltz, Raymond] Univ Cologne, Univ Hosp, Cologne, Germany, [Martin-Rosello, Maria Luisa] IBIMA Inst, Grp CA15 Palliat Care, Malaga, Spain, [Ruiz-Torreras, Inmaculada] IBIMA Inst, Grp CA15 Palliat Care, Malaga, Spain, [Montilla, Silvi] Univ Buenos Aires, Inst Med Res A Lanari, Buenos Aires, DF, Argentina, [Tripodoro, Vilma] Univ Buenos Aires, Inst Med Res A Lanari, Buenos Aires, DF, Argentina, [Veloso, Veronica, I] Univ Buenos Aires, Inst Med Res A Lanari, Buenos Aires, DF, Argentina, [Sigurdardottir, Katrin Ruth] Haukeland Hosp, Dept Anaesthesia & Surg Serv, Specialist Palliat Care Team, Bergen, Norway, [van der Kuy, Hugo M.] Univ Med Ctr, Dept Clin Pharm, Erasmus MC, Rotterdam, Netherlands, [van Zuylen, Lia] Univ Amsterdam, Dept Med Oncol, Med Ctr, Amsterdam, Netherlands, [Voltz, Raymond] Univ Cologne, Fac Med, Ctr Integrated Oncol Aachen Bonn Cologne Dusseldo, Cologne, Germany, [Voltz, Raymond] Univ Cologne, Fac Med, Clin Trials Ctr ZKS, Cologne, Germany, [Voltz, Raymond] Univ Cologne, Fac Med, Ctr Hlth Serv Res ZVFK, Cologne, Germany, [Zambrano, Sofia C.] Univ Bern, Inst Social & Prevent Med ISPM, Bern, Switzerland, European Union, University of Humanistic Studies, A meaningful life in a just and caring society, and General Practice
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palliative care ,Terminally-ill ,Questionnaire ,public health ,610 Medicine & health ,General Medicine ,adult palliative care ,SDG 3 - Good Health and Well-being ,Cancer-patients ,360 Social problems & social services ,End ,Perspective ,Validation ,Perceptions ,Quality-of-life ,Adaptation - Abstract
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.
- Published
- 2022