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

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; Judith 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

doi:10.1136/bmjopen-2021-057229

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

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 HedmanTanja 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, Judith 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

^*Corresponding author for this work

Research output: Contribution to journal › Article › Academic › peer-review

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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.

Original language	English
Article number	057229
Number of pages	9
Journal	BMJ Open
Volume	12
Issue number	8
DOIs	https://doi.org/10.1136/bmjopen-2021-057229
Publication status	Published - 5 Aug 2022

Bibliographical note

Funding: This work is supported by the European Union's Horizon 2020 Research and Innovation Programme under Grant agreement no. 825731.

Publisher Copyright: © Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY. Published by BMJ.

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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Yildiz, B., Allan, S., Bakan, M., Barnestein-Fonseca, P., Berger, M., Boughey, M., Christen, A., De Simone, G. G., Egloff, M., Ellershaw, J., Elsten, E. E. C. M., Eychmüller, S., Fischer, C., Fürst, C. J., Geijteman, E. C. T., Goldraij, G., Goossensen, A., Halfdanardottir, S. I., Haugen, D. F., ... Van Der Heide, A. (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), Article 057229. https://doi.org/10.1136/bmjopen-2021-057229

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title = "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",

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.",

author = "Berivan Yildiz and Simon Allan and Misa Bakan and Pilar Barnestein-Fonseca and Michael Berger and Mark Boughey and Andri Christen and {De Simone}, {Gustavo G.} and Martina Egloff and John Ellershaw and Elsten, {Eline E.C.M.} and Steffen Eychm{\"u}ller and Claudia Fischer and F{\"u}rst, {Carl Johan} and Geijteman, {Eric C.T.} and Gabriel Goldraij and Anne Goossensen and Halfdanardottir, {Svandis Iris} and Haugen, {Dagny Faksv{\aa}g} and Christel Hedman and Tanja Hoppe and Rosemary Hughes and Iversen, {Grethe Skorpen} and Melanie Joshi and Hana Kodba-Ceh and Korfage, {Ida J.} and Urska Lunder and Nora L{\"u}thi and Mart{\'i}n-Rosell{\'o}, {Maria Luisa} and Stephen Mason and Tamsin Mcglinchey and Silvi Montilla and Rasmussen, {Birgit H.} and Inmaculada Ruiz-Torreras and Schelin, {Maria E.C.} and Sigurdardottir, {Katrin Ruth} and Valgerdur Sigurdardottir and Judith Simon and Ruthmarijke Smeding and Kjersti Solv{\aa}g and Julia Strupp and Vilma Tripodoro and {Van Der Kuy}, {Hugo M.} and {Van Der Rijt}, {Carin C.D.} and {Van Zuylen}, Lia and Veloso, {Ver{\'o}nica I.} and Eva Vibora-Martin and Raymond Voltz and Zambrano, {Sofia C.} and {Van Der Heide}, Agnes",

note = "Funding: This work is supported by the European Union's Horizon 2020 Research and Innovation Programme under Grant agreement no. 825731. Publisher Copyright: {\textcopyright} Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY. Published by BMJ.",

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Yildiz, B, Allan, S, Bakan, M, Barnestein-Fonseca, P, Berger, M, Boughey, M, Christen, A, De Simone, GG, Egloff, M, Ellershaw, J, Elsten, EECM, Eychmüller, S, Fischer, C, Fürst, CJ, Geijteman, ECT, Goldraij, G, Goossensen, A, Halfdanardottir, SI, Haugen, DF, Hedman, C, Hoppe, T, Hughes, R, Iversen, GS, Joshi, M, Kodba-Ceh, H, Korfage, IJ, Lunder, U, Lüthi, N, Martín-Roselló, ML, Mason, S, Mcglinchey, T, Montilla, S, Rasmussen, BH, Ruiz-Torreras, I, Schelin, MEC, Sigurdardottir, KR, Sigurdardottir, V, Simon, J, Smeding, R, Solvåg, K, Strupp, J, Tripodoro, V, Van Der Kuy, HM , Van Der Rijt, CCD, Van Zuylen, L, Veloso, VI, Vibora-Martin, E, Voltz, R, Zambrano, SC & Van Der Heide, A 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, vol. 12, no. 8, 057229. https://doi.org/10.1136/bmjopen-2021-057229

TY - JOUR

T1 - Live well, die well - an international cohort study on experiences, concerns and preferences of patients in the last phase of life

T2 - the research protocol of the iLIVE study

AU - Yildiz, Berivan

AU - Allan, Simon

AU - Bakan, Misa

AU - Barnestein-Fonseca, Pilar

AU - Berger, Michael

AU - Boughey, Mark

AU - Christen, Andri

AU - De Simone, Gustavo G.

AU - Egloff, Martina

AU - Ellershaw, John

AU - Elsten, Eline E.C.M.

AU - Eychmüller, Steffen

AU - Fischer, Claudia

AU - Fürst, Carl Johan

AU - Geijteman, Eric C.T.

AU - Goldraij, Gabriel

AU - Goossensen, Anne

AU - Halfdanardottir, Svandis Iris

AU - Haugen, Dagny Faksvåg

AU - Hedman, Christel

AU - Hoppe, Tanja

AU - Hughes, Rosemary

AU - Iversen, Grethe Skorpen

AU - Joshi, Melanie

AU - Kodba-Ceh, Hana

AU - Korfage, Ida J.

AU - Lunder, Urska

AU - Lüthi, Nora

AU - Martín-Roselló, Maria Luisa

AU - Mason, Stephen

AU - Mcglinchey, Tamsin

AU - Montilla, Silvi

AU - Rasmussen, Birgit H.

AU - Ruiz-Torreras, Inmaculada

AU - Schelin, Maria E.C.

AU - Sigurdardottir, Katrin Ruth

AU - Sigurdardottir, Valgerdur

AU - Simon, Judith

AU - Smeding, Ruthmarijke

AU - Solvåg, Kjersti

AU - Strupp, Julia

AU - Tripodoro, Vilma

AU - Van Der Kuy, Hugo M.

AU - Van Der Rijt, Carin C.D.

AU - Van Zuylen, Lia

AU - Veloso, Verónica I.

AU - Vibora-Martin, Eva

AU - Voltz, Raymond

AU - Zambrano, Sofia C.

AU - Van Der Heide, Agnes

N1 - Funding: This work is supported by the European Union's Horizon 2020 Research and Innovation Programme under Grant agreement no. 825731. Publisher Copyright: © Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY. Published by BMJ.

PY - 2022/8/5

Y1 - 2022/8/5

N2 - 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.

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. Trial registration number NCT04271085.

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U2 - 10.1136/bmjopen-2021-057229

DO - 10.1136/bmjopen-2021-057229

M3 - Article

AN - SCOPUS:85136038475

SN - 2044-6055

VL - 12

JO - BMJ Open

JF - BMJ Open

IS - 8

M1 - 057229

ER -

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

Abstract

Bibliographical note

UN SDGs

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