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. 2025 Jan 9;20(1):e0317002.
doi: 10.1371/journal.pone.0317002. eCollection 2025.

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

Maria E C Schelin  1 , Christel Hedman  1   2   3 , Pilar Barnestein-Fonseca  4 , Martina Egloff  5 , John Ellershaw  6 , Dagny Faksvåg Haugen  7   8 , Claudia Fischer  9 , Melanie Joshi  10 , Ida J Korfage  11 , Urška Lunder  12 , Stephen Mason  6 , Judit Simon  9 , Vilma A Tripodoro  13   14 , Berivan Yildiz  11 , Sofia C Zambrano  5   15 , Steffen Eychmueller  5 , Lia van Zuylen  16 , Agnes van der Heide  11 , Carl Johan Fürst  1 ; iLIVE Consortium
Affiliations

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

Maria E C Schelin et al. PLoS One. .

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 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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Conflict of interest statement

The authors have declared that no competing interests exist.

Figures

Fig 1
Fig 1. Flowchart showing inclusion of patients in the iLIVE-study.
Fig 2
Fig 2. Number of patients who died and number and percentage of patients who completed the follow-up questionnaire.
Fig 3
Fig 3. Survival by main diagnosis and healthcare setting.
See this image and copyright information in PMC

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