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Quality of Life Research
Published in: Quality of Life Research 2/2018

Open Access 01-02-2018

International development of four EORTC disease-specific quality of life questionnaires for patients with Hodgkin lymphoma, high- and low-grade non-Hodgkin lymphoma and chronic lymphocytic leukaemia

Authors: Lonneke van de Poll-Franse, Simone Oerlemans, Anne Bredart, Charalampia Kyriakou, Monika Sztankay, Stephan Pallua, Laurien Daniëls, Carien L. Creutzberg, Kim Cocks, Sandra Malak, Giovanni Caocci, Stefano Molica, Weichu Chie, Fabio Efficace, on behalf of the EORTC Quality of Life Group

Published in: Quality of Life Research | Issue 2/2018

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Abstract

Purpose

This paper describes the international, cross-cultural development of four disease-specific EORTC QoL questionnaires, to supplement the EORTC QLQ-C30, for patients with Hodgkin lymphoma (HL), high- or low-grade non-Hodgkin lymphoma (HG/LG-NHL), and CLL.

Methods

Questionnaire development was conducted according to guidelines from the EORTC Quality of Life Group. Phase I comprised generation of QoL issues relevant to patients. Phase II included operationalization and assessment of item relevance. In phase III, items were pretested in a cross-cultural sample.

Results

In Phase I, 75 issues were identified through focus groups and systematic literature searches. Interviews with 80 health-care professionals and 245 patients resulted in a provisional module of 38 items (phase II) representing items relevant for all or at least one of the four malignancies. In Phase III, this was tested in 337 patients from five European countries and resulted in a questionnaire with 27 items for HL (EORTC QLQ-HL27), 29 items for HG-NHL (EORTC QLQ-NHL-HG29), 20 items for LG-NHL (EORTC QLQ-NHL-LG20) and 17 items for CLL (EORTC QLQ-CLL17).

Conclusions

This study provides four new EORTC modules for use in clinical research and routine practice in conjunction with the EORTC QLQ-C30 for assessing QoL in patients with lymphoma and CLL.
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Metadata
Title
International development of four EORTC disease-specific quality of life questionnaires for patients with Hodgkin lymphoma, high- and low-grade non-Hodgkin lymphoma and chronic lymphocytic leukaemia
Authors
Lonneke van de Poll-Franse
Simone Oerlemans
Anne Bredart
Charalampia Kyriakou
Monika Sztankay
Stephan Pallua
Laurien Daniëls
Carien L. Creutzberg
Kim Cocks
Sandra Malak
Giovanni Caocci
Stefano Molica
Weichu Chie
Fabio Efficace
on behalf of the EORTC Quality of Life Group
Publication date
01-02-2018
Publisher
Springer International Publishing
Published in
Quality of Life Research / Issue 2/2018
Print ISSN: 0962-9343
Electronic ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-017-1718-y

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