Development of an interpretation guideline for the EORTC PRO measures

Project summary

The assessment of PRO data in oncological practice and research has proved to be beneficial for patient outcomes. By offering guidance on interpretation, the EORTC QLG aims to support the use of PRO data assessed with its measures. To meet the need for practical guidelines on how to differentiate and use the various ways of interpreting EORTC PRO data, we aim to develop a guideline including best practice recommendations on interpreting PROs assessed with EORTC PRO measures for scientific as well as clinical use. The recommendations in the guideline will be based on existing evidence and consensus between PRO experts in the field, including buy-in from relevant stakeholders (i.e. patient representatives, clinicians, researchers, pharma representatives). Guideline development will follow the procedure established by the National Institute of Care and Health Excellence and the GIN-McMaster Guideline Development Checklist.

Achievements

We presented our project at the Guidelines International Network Conference 2021 (https://g-i-n.net/) and have set up standard procedures for guideline development at the main study site.

 

Future plans

The study protocol has been finalised and we have started collating the evidence for the guideline scope (by means of systematic literature review, expert call and stakeholder assessment).

Official project start: September 2021. Phase I (Scoping) is ongoing.

 

Interested in the project or want to tell us your opinion on EORTC PRO data interpretation?

You are cordially invited to contact the PI (monika.sztankay@i-med.ac.at) for  more information on the project and possibilities for future collaboration.

We are looking forward to hearing from you!

For patients

Up to date, the EORTC Quality of Life Group offers guidance on how to develop its PRO questionnaires, how to translate and how to migrate them into electronic platforms for assessing PROs in clinical trials and in clinical practice.

What is currently missing is a guideline for the interpretation of PRO data, assessed with EORTC PRO questionnaires. The emerging guideline aims to support researchers, as well as patients and clinicians, in interpreting PRO scores correctly and evaluate the results’ clinical relevance. The final guideline will include the expertise of estimated colleagues in the field as well as from researchers, clinicians, and patients working in and with the EORTC Quality of Life Group.

Publications

Abstract on guideline development presented at Guidelines International Network Conference 2021 (Welcome to the GIN Conference – GIN (g-i-n.net)

Planned publications:

  • Kick-off manuscript in preparation
  • Manuscript on study protocol in preparation