Informing relatives of non-surviving patients about research participation following out-of-hospital cardiac arrest: a prospective cohort study

Le résumé fourni par la source

• Bereaved relatives are not routinely informed of trial enrolment in UK cardiac arrest trials. • This study assessed sending condolence letters to relatives in the POSED trial. • We sent 18 of 33 letters; contact or timing issues precluded sending others. • No complaints or enquiries were received from recipients. • The approach was viable but requires streamlining for wider implementation. Currently, it is not common UK practice to actively inform relatives of non-surviving patients about enrolment in out-of-hospital cardiac arrest (OHCA) trials. However, in the US and elsewhere, researchers routinely notify relatives at the earliest opportunity. We assessed the process of writing to relatives of non-surviving patients enrolled in the Prehospital Optimal Shock Energy for Defibrillation (POSED) study. This prospective, non-randomised cohort study was a sub-study of the POSED randomised controlled trial. Together with public and patient partners, we developed a condolence letter, minimising the burden of information whilst offering support and further information. Next of kin contact details were verified using two independent sources. Acceptability was assessed by monitoring enquiries or complaints received. We recorded time taken to gather details, discordance between sources and number of cases where we could not obtain details. We sent letters to 18/33 (55%) of relatives. Fifteen letters were not sent because we could not obtain relative’s details (n = 5), could not verify with another source (n = 3), found discordance between sources (n = 5), or the agreed time window had passed (n = 2). The median time spent per case was 27 minutes (IQR 20–40). No enquiries or complaints were received. Identifying the next of kin for individuals who did not survive OHCA was challenging and required significant resources. However, no comments or complaints were received from relatives who were sent information about trial participation. Trial registration number: ISRCTN16327029

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