Schelin Maria E C, Hedman Christel, Barnestein-Fonseca Pilar, Egloff Martina, Ellershaw John, Faksvåg Haugen Dagny, Fischer Claudia, Joshi Melanie, Korfage Ida J, Lunder Urška, Mason Stephen, Simon Judit, Tripodoro Vilma A, Yildiz Berivan, Zambrano Sofia C, Eychmueller Steffen, van Zuylen Lia, van der Heide Agnes, Fürst Carl Johan
Institute for Palliative Care, Region Skåne and Department of Clinical Sciences Lund, Lund University, Lund, Sweden.
Department of Molecular Medicine and Surgery, Karolinska Institutet, Stockholm, Sweden.
PLoS One. 2025 Jan 9;20(1):e0317002. doi: 10.1371/journal.pone.0317002. eCollection 2025.
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.
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.
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.
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.
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.
大型国际队列研究能产生高级别的证据，但资源消耗巨大。在临终关怀领域，此类研究较为匮乏。因此，就筛查、招募、留存和生存数据而言，规划未来研究仍是一项挑战。
旨在描述一项关于患者及其亲属在临终时的期望、担忧和偏好的跨国研究中的招募、随访及生存情况。
在这项涉及11个国家的队列研究中，对年龄大于18岁的患者进行为期6个月的随访，纳入标准基于一个经过调整的“意外问题”来评估患者的临终状态。要求患者知晓其预期寿命有限。我们收集了患者问卷（基线和1个月时），并在医疗记录中查找死亡日期。邀请每位患者的一名亲属参与。
共筛查了26735名患者以确定是否符合纳入标准，3065名（11%）被认定符合条件并受邀参与，1509名选择参与，即占最初筛查人数的6%。共有699名患者（49%）参与了1个月的随访，参与比例根据生存时间有所不同，若患者在第2个月死亡，参与比例为20%，若在第6个月死亡则为75%。生存时间与患者性别或年龄无关，但与诊断、居住国家和医疗环境有关。
为确定合格人选，需筛查的人数约为预期队列规模的20倍。预后判断困难，我们注意到纳入后生存情况分布广泛。患者在死亡前很久就难以完成随访问卷。
