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

Abstract

PurposeThis 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.MethodsQuestionnaire 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.ResultsIn 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).ConclusionsThis 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.

Quality of life in survivors of adult haematological malignancy

“…These treatments have also led to significant improvements in survival rates (Mounier et al, ; Pulte et al, ). When a patient is diagnosed with a B‐cell malignancy, the treatment not only affects clinical outcomes, but also it can influence their quality of life (QoL) (van de Poll‐Franse et al, ). The physical difficulties (e.g.…”

Health‐related quality of life in Waldenstrom Macroglobulinemia and IgM‐related disorders: A single institution experience

“…In the last decade, specific questionnaires were introduced for patients with different hematological malignancies to supplement the EORTC QLQ‐C30 …”

Validation of the Chinese EORTC chronic lymphocytic leukaemia module – application of classical test theory and item response theory

“…Accordingly, the assessment of CLL patients' HRQoL by using a disease-specific measure seems imperative. Moreover, it has also been argued that the use of general measures, such as the SF-12, may limit a full appraisal of outcome difference between arms in clinical trials [13]. With a standardized and validated HRQoL scale, the sensitivity to detect functional limitations and symptoms in future trials on CLL patients is expected to increase.…”

“…In 2018, the Quality of Life Group of the European Organisation for Research and Treatment of Cancer (EORTC) developed a series of lymphoma-specific measures to assess the HRQoL of patients with different types of lymphoma [13]. Among them, EORTC QLQ-CLL17 (CLL17), a CLLspecific scale, was introduced.…”

“…Among them, EORTC QLQ-CLL17 (CLL17), a CLLspecific scale, was introduced. Although the scale is in phase III of development, which means that it can be used for validation within different social and cultural contexts but should not be regarded as the final version of the scale, it has been reported to have good reliability (the Cronbach's alpha ranges between 0.85 and 0.88) and validity when using a sample of 86 participants from five Western countries [13]. The new scale provides an advanced assessment of the HRQoL, including both the physical and mental dimensions of patients living with CLL.…”