Improving completion and standard of data collection and use in trials: setting standards for the next generation
Project summary
The primary objective of this study is to investigate ways on how to improve the completion rates for health-related quality of life (HRQOL) assessments in EORTC cancer trials. The output of this project will be in the form of guidelines and a training program that can be used by the EORTC QLG and EORTC DOGs for the design and collection of HRQOL data in EORTC trials.
Achievements
- Literature review on recommendations to improve completion rates in cancer clinical trials has been published.
- Manuscript on the summary of the completion rates of EORTC trials is under revision after internal review
- Two abstracts on the literature review and completion rates summary were published. One abstract on qualitative data analysis has been submitted to ISOQOL.
- Interviews with healthcare professionals, protocol writers and patient representatives completed.
- Qualitative data from the interviews has been cleaned and analysed.
- Two manuscripts on qualitative data being drafted.
- Several internal processes at EORTC HQ have been updated, such as site training slides and other relevant QoL documentation to improve completion rates of EORTC trials.
Future plans
Submit three journal articles on completion rates of EORTC trials and stakeholder perspectives on value, barriers and facilitators of PRO data collection in oncology trials.
In the final year of the project (2026), we will complete compliance guidelines development (working together with REQUALIFY to include this in the Bluebook), setting up educational program for liaisons and development of standardized slide deck. We will prepare a final report.
For patients
The aim of this project is to find and develop strategies that will substantially contribute to the already existing efforts to improve the process of health-related quality of life (HRQoL) assessment in EORTC cancer clinical studies, and therefore improving the compliance rates for HRQOL assessments.
Publications
van der Weijst L, Machingura A, Alanya et al. Improving completion rates of patient-reported outcome measures in cancer clinical trials: Scoping review investigating the implications for trial designs. Eur J Cancer. 2024 Nov;212:114313. doi: 10.1016/j.ejca.2024.114313. Epub 2024 Sep 18. PMID: 39305741.