EONS is currently running a research project, entitled: “Establishing a core set of patient-reported outcomes and measures to enhance supportive care for people treated with targeted therapies for advanced renal cell carcinoma or advanced hepatocellular carcinoma” (abbreviated as PROMs in RCC and HCC).
The aims of the project are:
- To develop a core set of patient-reported outcomes (PROs) and measures (PROMs) that are of relevance to key stakeholders, i.e. people treated with targeted therapies for advanced RCC or advanced HCC, family members, and treating clinicians.
- To explore the level, extent and predictors of impact on core PROs, as measured by core PROMs, in people treated with targeted therapies for advanced RCC or advanced HCC.
This is a prospective, multinational, mixed-methods study, comprising three consecutive work packages (WP):
WP1: A rapid literature review and multinational online Delphi with strong stakeholder input will be conducted to address the first aim of the project.
The Delphi study findings were published in the European Journal of Oncology Nursing (EJON) in November 2022. It is available here: Diez de los Rios de la Serna, C, Kotronoulas, G., Drury, A., Oldenmenger, W. and Kelly, D., 2022. A rapid review of patient-reported outcomes investigated in the context of advanced renal cell cancer or advanced hepatocellular cancer. European Journal of Oncology Nursing, p.102241. https://doi.org/10.1016/j.ejon.2022.102241.
WP2: A multinational, cross-sectional survey to address the second aim of the project targeting patients from European countries is now finished and closed. Results are published in a scientific journal:
Diez de los Rios de la Serna, C., Drury, A., Oldenmenger, W.H., Kelly, D., Kotronoulas, G. (2023) A Delphi study of core patient-reported outcomes for advanced renal cell carcinoma and advanced hepatocellular carcinoma. Seminars in Oncology Nursing,p.151409. https://doi.org/10.1016/j.soncn.2023.151409
Direct full text link: https://www.sciencedirect.com/science/article/pii/S0749208123000402
WP3: Dissemination of the project’s findings to relevant audiences and stakeholders.
Project timelines: January 2021 – September 2023
The project is led by Dr Grigorios Kotronoulas (University of Glasgow, UK) together with co-investigators, Professor Daniel Kelly (University of Cardiff, UK), Dr Wendy Oldenmenger (Erasmus MC, University Medical Center Rotterdam, NL), and Dr Amanda Drury (University College Dublin, IRE). Celia Díez de los Ríos de la Serna (EONS Research assistant) will support delivery of the project.
EONS would like to thank Ipsen and Eisai for their support through a restricted educational grant.
