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Recruitment, follow-up and survival in an 11-country cohort study of patients at the end of life and their relatives

Schelin, Maria E.C. LU orcid ; Hedman, Christel LU ; Barnestein-Fonseca, Pilar ; Egloff, Martina ; Ellershaw, John ; Haugen, Dagny Faksvåg ; Fischer, Claudia ; Joshi, Melanie ; Korfage, Ida J. and Lunder, Urška , et al. (2025) In PLoS ONE 20(1).
Abstract

Background Large, international cohort studies generate high-level evidence, but are resource intense. In end-of-life care such studies are scarce. Hence, planning for future studies in terms of data on screening, recruitment, retention and survival remains a challenge. Objectives The aim was to describe recruitment, follow-up and survival in a multinational study of patients’ and relatives’ expectations, concerns and preferences at the end of life. Methods In this 11-country cohort study with six months follow-up patients, >18 years old, were included on the basis of an adapted “surprise question” to assess patients´ end of life status. Patients were required to be aware of their limited life expectancy. We collected patient... (More)

Background Large, international cohort studies generate high-level evidence, but are resource intense. In end-of-life care such studies are scarce. Hence, planning for future studies in terms of data on screening, recruitment, retention and survival remains a challenge. Objectives The aim was to describe recruitment, follow-up and survival in a multinational study of patients’ and relatives’ expectations, concerns and preferences at the end of life. Methods In this 11-country cohort study with six months follow-up patients, >18 years old, were included on the basis of an adapted “surprise question” to assess patients´ end of life status. Patients were required to be aware of their limited life expectancy. We collected patient questionnaires (baseline and 1 month), and searched medical records for the date of death. One relative per patient was invited to participate. Results 26735 patients were screened for inclusion, 3065 (11%) were found eligible and were invited to participate, 1509 chose to participate, i.e. 6% of those initially screened. A total of 699 patients (49%) participated in the 1-month follow-up, with proportions varying according to survival time, from 20% if the patient died at month 2, to 75% if the patient died at month 6. Survival time was not associated with patient gender or age, but with diagnosis, country of residence and healthcare setting. Conclusion Approximately 20 times the desired cohort size had to be screened for eligibility. Prognostication was difficult, we noted a wide distribution of survival after inclusion. Patients’ ability to complete follow-up questionnaires declined well before death.

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author collaboration
organization
publishing date
type
Contribution to journal
publication status
published
subject
in
PLoS ONE
volume
20
issue
1
article number
e0317002
publisher
Public Library of Science (PLoS)
external identifiers
  • scopus:85214874531
  • pmid:39787143
ISSN
1932-6203
DOI
10.1371/journal.pone.0317002
language
English
LU publication?
yes
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Publisher Copyright: © 2025 Schelin et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
id
5127d9e3-e650-4f7a-8fcd-b60bf013d411
date added to LUP
2025-03-21 10:47:48
date last changed
2025-07-11 19:40:43
@article{5127d9e3-e650-4f7a-8fcd-b60bf013d411,
  abstract     = {{<p>Background Large, international cohort studies generate high-level evidence, but are resource intense. In end-of-life care such studies are scarce. Hence, planning for future studies in terms of data on screening, recruitment, retention and survival remains a challenge. Objectives The aim was to describe recruitment, follow-up and survival in a multinational study of patients’ and relatives’ expectations, concerns and preferences at the end of life. Methods In this 11-country cohort study with six months follow-up patients, &gt;18 years old, were included on the basis of an adapted “surprise question” to assess patients´ end of life status. Patients were required to be aware of their limited life expectancy. We collected patient questionnaires (baseline and 1 month), and searched medical records for the date of death. One relative per patient was invited to participate. Results 26735 patients were screened for inclusion, 3065 (11%) were found eligible and were invited to participate, 1509 chose to participate, i.e. 6% of those initially screened. A total of 699 patients (49%) participated in the 1-month follow-up, with proportions varying according to survival time, from 20% if the patient died at month 2, to 75% if the patient died at month 6. Survival time was not associated with patient gender or age, but with diagnosis, country of residence and healthcare setting. Conclusion Approximately 20 times the desired cohort size had to be screened for eligibility. Prognostication was difficult, we noted a wide distribution of survival after inclusion. Patients’ ability to complete follow-up questionnaires declined well before death.</p>}},
  author       = {{Schelin, Maria E.C. and Hedman, Christel and Barnestein-Fonseca, Pilar and Egloff, Martina and Ellershaw, John and Haugen, Dagny Faksvåg and Fischer, Claudia and Joshi, Melanie and Korfage, Ida J. and Lunder, Urška and Mason, Stephen and Simon, Judit and Tripodoro, Vilma A. and Yildiz, Berivan and Zambrano, Sofia C. and Eychmueller, Steffen and van Zuylen, Lia and van der Heide, Agnes and Fürst, Carl Johan and Goldraij, Gabriel and Boughey, Mark and Berger, Michael and Strupp, Julia and Voltz, Raymond and Iris, Svandis and Sigurdardottir, Valgerdur and Goossensen, Anne and Geijteman, Eric and van den Bosch, Geerke and Pot, Iris and van der Rijt, Karin and Allan, Simon and Iversen, Grethe Skorpen and Sigurdadottir, Katrin and Solvag, Kjersti and Romarheim, Elisabeth and Kodba, Hana and Bakan, Misa and Vibora, Eva and Martin, Marisa and Ruiz Torreras, Inmaculara and Rasmussen, Birgit and Birgisdottir, Drofn and Leyland, Anne and Davies, Jo and McGlinchey, Tamsin and Smeding, Ruthmarijke}},
  issn         = {{1932-6203}},
  language     = {{eng}},
  number       = {{1}},
  publisher    = {{Public Library of Science (PLoS)}},
  series       = {{PLoS ONE}},
  title        = {{Recruitment, follow-up and survival in an 11-country cohort study of patients at the end of life and their relatives}},
  url          = {{http://dx.doi.org/10.1371/journal.pone.0317002}},
  doi          = {{10.1371/journal.pone.0317002}},
  volume       = {{20}},
  year         = {{2025}},
}