TY - JOUR
T1 - Recruitment, follow-up and survival in an 11-country cohort study of patients at the end of life and their relatives
AU - Schelin, Maria E. C.
AU - Hedman, Christel
AU - Barnestein-Fonseca, Pilar
AU - Egloff, Martina
AU - Ellershaw, John
AU - Haugen, Dagny Faksvåg
AU - Fischer, Claudia
AU - Joshi, Melanie
AU - Korfage, Ida J.
AU - Lunder, Urška
AU - Mason, Stephen
AU - Simon, Judit
AU - Tripodoro, Vilma A.
AU - Yildiz, Berivan
AU - Zambrano, Sofia C.
AU - Eychmueller, Steffen
AU - van Zuylen, Lia
AU - van der Heide, Agnes
AU - Fürst, Carl Johan
AU - Goldraij, Gabriel
AU - Boughey, Mark
AU - Berger, Michael
AU - Strupp, Julia
AU - Voltz, Raymond
AU - Iris, Svandis
AU - Sigurdardottir, Valgerdur
AU - Goossensen, Anne
AU - Geijteman, Eric
AU - van den Bosch, Geerke
AU - Pot, Iris
AU - van der Rijt, Karin
AU - Allan, Simon
AU - Iversen, Grethe Skorpen
AU - Sigurdadottir, Katrin
AU - Solvag, Kjersti
AU - Romarheim, Elisabeth
AU - Kodba, Hana
AU - Bakan, Misa
AU - Vibora, Eva
AU - Martin, Marisa
AU - Ruiz Torreras, Inmaculara
AU - Rasmussen, Birgit
AU - Birgisdottir, Drofn
AU - iLIVE Consortium
AU - Leyland, Anne
AU - Davies, Jo
AU - McGlinchey, Tamsin
AU - Smeding, Ruthmarijke
N1 - 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.
PY - 2025/1/1
Y1 - 2025/1/1
N2 - 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.
AB - 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.
UR - https://www.scopus.com/pages/publications/85214874531
U2 - 10.1371/journal.pone.0317002
DO - 10.1371/journal.pone.0317002
M3 - Article
C2 - 39787143
SN - 1932-6203
VL - 20
JO - PLoS ONE
JF - PLoS ONE
IS - 1
M1 - e0317002
ER -