As QoL research has become increasingly important the QLG is keen that high quality information regarding its assessment and use in clinical trials be available. This has been facilitated by the publication of several manuals known as "blue books".
This manual was prepared by P. Fayers, N. Aaronson, K. Bjordal, M. Groenvold, D. Curran and A. Bottomley. It includes a general introduction and the history of development of the QLQ-C30, as well as specific modules and detailed scoring procedures. A full bibliography is also included. This manual is free of charge to academic users of the QLQ-C30 and contains information for all users of the QLQ-C30, and is automatically sent to all registered users. Permission to use the QLQ-C30 and the scoring manual in a commercial setting can be obtained from Cheryl Whittaker.
To download the scoring manual, please fill in the registration form.
We have recently introduced a summary score for the QLQ-C30 (EORTC QLQ-C30 Summary Score) to supplement the 15-outcome profile generated by the QLQ-C30 and facilitate more reliable hypothesis testing using QLQ-C30 data. Click here to download the scoring algorithm. More details on this summary score can be found in this publication.
GUIDELINES FOR DEVELOPING QUESTIONNAIRE MODULES
This manual was prepared by 11 members of the Quality of Life Group, led by Colin Johnson.
Module construction begins with clearly specifying the research question and the target population for which the module will be designed. The selection of content for a module is largely based on patient-derived data, shaped by the scope of the module as determined by the developers. During module development qualitative and quantitative data are collected from patients with the full range of disease stage and treatment types to be covered by the module.
The actual module development process consists of four phases: (1) generation of relevant issues, (2) creation of a provisional list of QOL issues and conversion of these into suitable items (questions) for pilot testing, (3) pretesting the provisional list of items, and selection of items for a provisional module, and (4) large-scale field-testing of the provisional module.
This manual is now online and can be accessed here.
This manual is the most recent update of the EORTC Translation Procedure. The translation procedure is a multi-step process and applies to all translations of the EORTC questionnaires. All translation projects are coordinated by the EORTC Quality of Life Department and new language version of the EORTC measures can be developed only with prior consent. For more information please contact Dagmara Kulis
The manual can be downloaded here.
REFERENCE VALUES MANUAL
The QLG, in association with the QOL Department, has developed a reference manual for the EORTC QLQ-C30. Members of the QLG, EORTC co-operative groups and members of the Cross-Cultural Meta-Analysis Group contributed data from their studies, which were pooled to create a large database on QOL. The manual tabulates the values for the individual QLQ-C30 items and scales according to the main cancer sites. The manual was developed to help familiarize researchers with the QLQ-C30 and to facilitate the interpretation of scores. The reference data may also be used to calculate sample sizes and formulae for sample size calculation are provided in the manual. The second edition of the manual, which contains reference data on a larger number of cancer sites, is now available to download, either as a complete document or as separate files for each disease site.
This manual is now online and can be accessed here. Separate files of the reference values manual for specific disease sites are available to download.
GUIDELINES FOR ASSESSING QUALITY OF LIFE IN EORTC CLINICAL TRIALS
This manual has been prepared by T. Young, H. de Haes, D. Curran, P. Fayers, Y. Brandberg, V. Vanvoorden and A. Bottomley. Despite the substantial side effects and functional impairment often associated with cancer treatment it is only recently that attention has been given to the assessment of QOL. The QLG and the QOL Department want to enhance the quality of data that is collected, and this is best achieved through sharing expertise and cooperation and collaboration with the Cooperative Groups. A common set of guidelines allowing a systematic approach across all EORTC clinical trials should further enhance the quality of data that is collected.
This manual aims to provide guidance for standardizing QOL assessment across EORTC randomized clinical trials, and to act as a reference source for "Good Clinical Practice" where QOL is being assessed in a clinical trial.
EORTC QUALITY OF LIFE GROUP - MANUAL FOR THE USE OF EORTC MEASURES IN DAILY CLINICAL PRACTICE
You can access the manual by contacting Justyna Mierzynska.