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Institute of Medical Biostatistics,
Epidemiology and Informatics (IMBEI)

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Update of the EORTC QLQ Reference Values Manual (EORTC RefVal)

Reference values (RV) related to specific oncology subgroups or the general population provide a context that facilitates the interpretation of so-called patient reported outcomes (PRO). RVs are also central in many ways to the study of patients' health-related quality of life.

To ensure that the RVs used continue to be a solid source for research and clinical practice, the current version of the EORTC QLQ Reference Manual needs to be updated and modernised. The EORTC funded project "Update of the EORTC QLQ Reference Values Manual" addresses this task.

The main objectives of this project are:

  1. Development of a standardised procedure to (continuously) update the RV for the QLQ-C30 and its modules (linked to the item library) as well as for CAT/short forms.
  2. Updating and expanding the pool of available RV data sets.
  3. Development of an expandable online RV database and an interactive user interface
  4. Development of guidance documents, including a) recommendations on the use of RV and the selection of appropriate reference populations, b) a user manual for the use of the interactive user interface; and c) update of the current EORTC QOL reference value manual

 

Project management:

  • Monika Sztankay (PI), University Hospital, Psychiatry II and Medical University of Innsbruck, Austria.
  • Susanne Singer (Co-PI), University Medical Centre, Institute of Medical Biometry, Epidemiology and Informatics (IMBEI), Mainz, Germany

Project duration: April 2022 - March 2026

Funding: European Organisation for Research and Treatment of Cancer (EORTC)

 

Project collaborators:

  • Mogens Groenvold. Department of Public Health, Section for Health Services Research, University of Copenhagen, Consultant and Head of the Palliative Care Research Unit, Department of Geritrics and Palliative Medicine, Bispebjerg Hospital, Denmark
  • Morten Petersen. University of Copenhagen, Denmark
  • Bernhard Holzner, Johannes Giesinger. University Hospital of Innsbruck, Psychiatry II & Medical University of Innsbruck, Innsbruck, Austria
  • Andrew Bottomley, Madeline Pe, Dagmara Kulis, Hugo Vachon, Christopher Courtois. EORTC Quality of Life Department, Brussels, Belgium
  • Matthias Rose. Charité – Universitätsmedizin Berlin, Campus Benjamin Franklin, Medizinische Klinik m.S. Psychosomatik, Berlin, Germany
  • Marianne Hjermstad. Regional Advisory Unit for Palliative Care, Dept. of Oncology, Oslo University Hospital / European Palliative Care Research Centre (PRC), Dept. of Oncology, Oslo University Hospital, and Institute of Clinical Medicine, University of Oslo, Oslo, Norway
  • Martin Eichler. University Medical Centre, Dresden, Germany
  • Sunil Shrestha. Nepal Cancer Hospital and Research Center Pvt. Ltd, Harisiddhi, Lalitpur, Nepal

 Patient representative:

  • Kate Morgan, Myelompatienten Europa
  • Jan Geißler, Patvocates