All work in WP 1 has been completed according to plan. Manuscripts of both the realist review and the flashmob study have been published, and a methodological paper on how to perform a realist review in the area of research has been submitted for publication.
The different parts of WP2 in the different countries have been aligned in the first year of the consortium: definitions of important determinants and variables (often based on ICD10 codes) were established to make sure that the data generated in the different countries would be comparable. The focus and methodology of the different epidemiological analyses were established to make sure that each individual study would be complementary to the others. All data analysis has been completed and shared with the consortium, so the other WPs could make optimal use of the findings. Manuscripts for each individual study have been submitted and accepted for publication, except for the Leiden data. As planned, the data from WP2 have largely informed the content of the shared decision tool. A position paper on how to standardize epidemiological studies in the field of palliative care and with a focus on ATT, bleeding and thrombotic complications, has been submitted for publication. Utrecht paper accepted for publication but not yet available online. A final synthesis paper, to summarize all findings from this WP2 and put those in the correct perspective, has been planned.
WP3: all interviews have been completed within the timeframe proposed in the application, and the mean results have been synthesized and shared & discussed with the consortium, as they form a very important basis for WP 4-6. The manuscript on patient perspective has been published, the one on physician perspective has been submitted. A methodological paper on how to perform such studies across several European countries as well as a mixed-methods paper taking into account findings from WP1 & 3 are being prepared.
WP4: the Delphi study has been completed and was fully based on the findings of WP1-3 and largely guided by the PPI work performed in the consortium. The study protocol was published and the final study report has been submitted for publication.
The findings of WP4 have determined details of WP5 and WP6, as planned.
WP5: a functioning and well tested tool has been developed and is being used in the trial in 4 languages (Dutch, English, Spanish and Polish).
WP6: The trial protocol, which was under development from day one of the consortium, has been completed, overcoming many challenges relevant to performing a pan-European study in end-of-life care. Much work has been done to optimally determine the 1) population of interest, 2) moment of application of the tool, 3) definition of the endpoint, that now reflects a patient relevant outcome that has been endorsed both by patients as well as by health care professionals. The first patient was enrolled on November 14th in Leiden, and start of the study in all countries is expected on January first 2025. It is a huge achievement by the study team to get to this point on schedule, underlying the dedication of the complete consortium.
WP7: Abstracts discussing findings of the WPs were submitted to several conferences and presented. Moreover, the aims, methodology, and preliminary results of the scientific work in SERENITY were presented at several meetings and webinars. All SERENITY consortium members are being kept up to date on news, progress reports and achievements by monthly newsletters and the consortium meetings. Also, high-quality instruction materials for how to use the tool have been developed. This is crucial for the study physicians and nurses at this point in time, but will also be applicable to the wider public when the tool will be made available online.
