ArticlePloS one2025
Recruitment, follow-up and survival in an 11-country cohort study of patients at the end of life and their relatives.
Article in PloS one, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
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Who cites it
2 citing papers in PubMed.
- End-of-life preparedness and emotional suffering in patients and caregivers: Findings from an international cohort study spanning the period before and after death.Palliative medicine · 2026Article
- Health-related quality of life in palliative care: determinants identified in a hospital-based observational study.BMC palliative care · 2025Observational
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Authors and funding
20 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundLarge, 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.
objectivesThe 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.
methodsIn 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.
results26735 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.
conclusionApproximately 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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