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

L.V. van de Poll-Franse, S. 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

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36 Citations (Scopus)
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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
Original languageEnglish
Pages (from-to)333–345
JournalQuality of Life Research
Volume27
Issue number2
DOIs
Publication statusPublished - 2018

Keywords

  • Adolescent
  • Adult
  • Aged
  • Female
  • Hodgkin Disease/epidemiology
  • Humans
  • Leukemia, Lymphocytic, Chronic, B-Cell/epidemiology
  • Lymphoma, Non-Hodgkin/epidemiology
  • Male
  • Middle Aged
  • Quality of Life/psychology
  • Research Design
  • Surveys and Questionnaires
  • Young Adult

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