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10-11-2017 | Uitgave 2/2018 Open Access

Quality of Life Research 2/2018

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

Tijdschrift:
Quality of Life Research > Uitgave 2/2018
Auteurs:
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

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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