Development of the Cancer Patient-reported Symptomatic Adverse Events Inventory (EORTC-PRO-AE) using the EORTC Item Library
Project summary
The EORTC Item Library is an online, interactive platform currently comprised of over 1000 unique items from the EORTC Quality of Life Group’s portfolio of questionnaires. These questionnaires are available in multiple languages and have demonstrated robust psychometric properties. The EORTC Item Library enables more flexible use of the items by allowing users to create customised item lists from the pool of available items, thereby increasing flexibility to cover different disease and treatment contexts. Previous work mapping the EORTC items to the CTCAE showed that the EORTC items capture many different symptomatic adverse events related to cancer and its treatment, in addition to other domains related to health-related quality of life (e.g., functioning, activities of daily living, body image, emotional impact of a symptom, diagnosis, or treatment, communication, and satisfaction with care). Moreover, for a given symptomatic adverse event, multiple EORTC items may be available.
The main objective of this project is to develop a comprehensive list of symptomatic adverse events measured in the EORTC Item Library and determine the ‘best’ item to measure each one. Additionally, we aim to develop new items to measure symptomatic adverse events for which no EORTC items are currently available, drawing on module development guidelines.
Achievements
- Work package 1: Update of EORTC-CTCAE mapping
- Updated the mapping of EORTC items using the CTCAE classification.
Work package 2: Delphi survey
- Completed Delphi survey to determine ‘best’ EORTC item for each adverse event.
Work package 3: Development of new items
- Qualitative interview study to develop new items is complete.
Future plans
- Write up and publication of the final study report
- Project is expected to be completed by October 2026
For patients
Asking individuals with cancer about the symptoms they experience is an important part of understanding the impact of the disease and its treatment. The EORTC Item Library is a database which contains all the questions developed by the EORTC Quality of Life Group to measure symptoms and problems related to cancer and its treatment. It currently includes over 1000 different questions, and, in some cases, multiple questions are available to measure a specific symptom.
The goal of this project is to summarise the symptoms covered in the EORTC Item Library and choose one preferred question to measure each symptom. We will also develop new questions to ask about some symptoms which are not currently included in the EORTC Item Library.