Scoring manual
This manual has been prepared by P. Fayers, N. Aaronson, K. Bjordal, M. Groenvold, D. Curran and A. Bottomley. It covers a general introduction, 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
For a download of the scoring manual, please fill in the registration form.
Guidelines for Developing Questionnaire Modules
This manual has been 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.
Translation procedure
This manual has been prepared by L. Dewolf, M. Koller, G. Velikova, C. Johnson, N. Scott and A. Bottomley. The translation procedures described apply to the translation of any document for the EORTC QLG. In practice this will most often involve the translation of the EORTC QLQ-C30 and modules. The QLQ-C30 is now available in 61 languages and several disease-specific modules already exist in multiple languages.
For all translations the translators should be native speakers of the language into which the questionnaire is being translated, with a high level of fluency in the other relevant language. The translation back to the original language (usually English) should be undertaken independently of the forward translation i.e. by different translators, who should be native speakers of that language and fluent in the language into which the questionnaire is being translated.
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. To obtain a seperate files of the refererence values manual for specific disease sites, please contact Rossella Guzzo.
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.
You can download the manual by clicking here.
EORTC Item Bank Guidelines
This
manual has been prepared by S. Vachalec, K. Bjordal, A. Bottomley, J. Blazeby,
H. Flechtner, P. Ruyskart on behalf of the EORTC Quality of Life Group. The
European Organisation for Research and Treatment of Cancer (EORTC) Quality
of Life Group has developed a computerized database in order to improve the
development and the quality of Quality of Life (QOL) questionnaires. This database
covers all the Items from all the EORTC QOL modules and the EORTC QOL Questionnaire
(QLQ-C30). This Item bank has three main aims: 1) Homogenize the wording of
the existing Items as well as their translations; 2) Improve the speed of development
of future modules; 3) Improve quality by using existing Items where ever possible.
A fourth use was highlighted while the Item Bank was developed: Items could
be used to complement the QLQ-C30 when no modules are available for specific
clinical trials.
This manual, is online and can be accessed here.