Introduction to PROMs developed by the EORTC
Development of EORTC PROMs
Developing a robust PROM is complex and time-consuming. The EORTC uses a four-phase process:
This phase includes:
1. Literature search to identify so-called “issues” (the experiences identified as having an impact on the QoL of cancer patients: e.g. “difficulties walking”)
2. Interviews with international samples of health care professionals and patients. Participants rate the importance of the presented issues and add missing issues.
The issues are converted into the standardised question format, resulting in a provisional version of the questionnaire that will be translated into different languages.
The provisional questionnaire is tested in international patient samples, focusing on e.g. burdensome, missing or redundant issues; phrasing, understandability or sequence of questions. Preliminary statistical testing of the completed questionnaires (including scale structure) is performed.
A large, international study is conducted to finalise the questionnaire by confirming acceptability, statistical quality criteria (reliability, validity), responsiveness, and cross-cultural comparability.
Details: EORTC QLG Guidelines for Developing Questionnaire Modules, Translation Procedure Manual of the EORTC.
EORTC QLG, 2021