Recruitment, follow-up and survival in an 11-country cohort study of patients at the end of life and their relatives.
<h4>Background</h4>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.<h4>...
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| Format: | Article |
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Public Library of Science (PLoS)
2025-01-01
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| Series: | PLoS ONE |
| Online Access: | https://doi.org/10.1371/journal.pone.0317002 |
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| author | Maria E C Schelin Christel Hedman Pilar Barnestein-Fonseca Martina Egloff John Ellershaw Dagny Faksvåg Haugen Claudia Fischer Melanie Joshi Ida J Korfage Urška Lunder Stephen Mason Judit Simon Vilma A Tripodoro Berivan Yildiz Sofia C Zambrano Steffen Eychmueller Lia van Zuylen Agnes van der Heide Carl Johan Fürst iLIVE Consortium |
| author_facet | Maria E C Schelin Christel Hedman Pilar Barnestein-Fonseca Martina Egloff John Ellershaw Dagny Faksvåg Haugen Claudia Fischer Melanie Joshi Ida J Korfage Urška Lunder Stephen Mason Judit Simon Vilma A Tripodoro Berivan Yildiz Sofia C Zambrano Steffen Eychmueller Lia van Zuylen Agnes van der Heide Carl Johan Fürst iLIVE Consortium |
| author_sort | Maria E C Schelin |
| collection | DOAJ |
| description | <h4>Background</h4>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.<h4>Objectives</h4>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.<h4>Methods</h4>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.<h4>Results</h4>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.<h4>Conclusion</h4>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. |
| format | Article |
| id | doaj-art-8344c091db13464399377bf0083c5440 |
| institution | Kabale University |
| issn | 1932-6203 |
| language | English |
| publishDate | 2025-01-01 |
| publisher | Public Library of Science (PLoS) |
| record_format | Article |
| series | PLoS ONE |
| spelling | doaj-art-8344c091db13464399377bf0083c54402025-01-17T05:31:27ZengPublic Library of Science (PLoS)PLoS ONE1932-62032025-01-01201e031700210.1371/journal.pone.0317002Recruitment, follow-up and survival in an 11-country cohort study of patients at the end of life and their relatives.Maria E C SchelinChristel HedmanPilar Barnestein-FonsecaMartina EgloffJohn EllershawDagny Faksvåg HaugenClaudia FischerMelanie JoshiIda J KorfageUrška LunderStephen MasonJudit SimonVilma A TripodoroBerivan YildizSofia C ZambranoSteffen EychmuellerLia van ZuylenAgnes van der HeideCarl Johan FürstiLIVE Consortium<h4>Background</h4>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.<h4>Objectives</h4>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.<h4>Methods</h4>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.<h4>Results</h4>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.<h4>Conclusion</h4>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.https://doi.org/10.1371/journal.pone.0317002 |
| spellingShingle | Maria E C Schelin Christel Hedman Pilar Barnestein-Fonseca Martina Egloff John Ellershaw Dagny Faksvåg Haugen Claudia Fischer Melanie Joshi Ida J Korfage Urška Lunder Stephen Mason Judit Simon Vilma A Tripodoro Berivan Yildiz Sofia C Zambrano Steffen Eychmueller Lia van Zuylen Agnes van der Heide Carl Johan Fürst iLIVE Consortium Recruitment, follow-up and survival in an 11-country cohort study of patients at the end of life and their relatives. PLoS ONE |
| title | Recruitment, follow-up and survival in an 11-country cohort study of patients at the end of life and their relatives. |
| title_full | Recruitment, follow-up and survival in an 11-country cohort study of patients at the end of life and their relatives. |
| title_fullStr | Recruitment, follow-up and survival in an 11-country cohort study of patients at the end of life and their relatives. |
| title_full_unstemmed | Recruitment, follow-up and survival in an 11-country cohort study of patients at the end of life and their relatives. |
| title_short | Recruitment, follow-up and survival in an 11-country cohort study of patients at the end of life and their relatives. |
| title_sort | recruitment follow up and survival in an 11 country cohort study of patients at the end of life and their relatives |
| url | https://doi.org/10.1371/journal.pone.0317002 |
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