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International development of an EORTC questionnaire for assessing health-related quality of life in chronic myeloid leukemia patients: The EORTC QLQ-CML24

Efficace,Fabio
Baccarani,Michele
Breccia,Massimo
Saussele,Susanne
Abel,Gregory
Caocci,Giovanni
Guilhot,Francois
Cocks,Kim
Naeem,Adel
Sprangers,Mirjam
... show 10 more
Abstract
Background Health-related quality of life (HRQOL) is a key aspect for chronic myeloid leukemia (CML) patients. The aim of this study was to develop a disease-specific HRQOL questionnaire for patients with CML to supplement the European Organization for Research and Treatment of Cancer (EORTC)-QLQ C30. Patients and methods The process followed a predefined and systematic stepwise iterative process as defined by the EORTC guidelines for questionnaire development. The process was divided into 3 phases: (1) generation of relevant HRQOL issues, (2) operationalization of the HRQOL issues into a set of items, and (3) pretesting the questionnaire for relevance and acceptability. Descriptive statistics and psychometric analyses were also performed. Results Overall, 655 CML patients were enrolled in 10 countries including the USA and countries in Europe and Asia. Interviews with health-care professionals experienced in CML (n = 59) were also conducted. Results from the interviews, clinical experiences, and statistical analyses were used to develop the EORTC QLQ-CML24. The final module consists of 24 items assessing the following aspects: symptom burden, impact on daily life and on worry/mood, body image problems, and satisfaction with care and with social life. Internal consistency, assessed with Cronbach’s alpha coefficients, ranged from 0.73 to 0.83 for the proposed scales. Conclusion The EORTC QLQ-CML24 is an internationally developed HRQOL questionnaire for CML patients, and its implementation in clinical research and practice can provide important information to facilitate clinical decision-making. Keywords: Quality of life, Chronic myeloid leukemia, Questionnaire
Description
Date
2014-04
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Volume Title
Publisher
Research Projects
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Journal Issue
Keywords
Quality of life, Chronic myeloid leukemia, Questionnaire, SDG 3 - Good Health and Well-being, SDG 17 - Partnerships for the Goals
Citation
Efficace, F, Baccarani, M, Breccia, M, Saussele, S, Abel, G, Caocci, G, Guilhot, F, Cocks, K, Naeem, A, Sprangers, M, Oerlemans, S, Chie, W, Castagnetti, F, Bombaci, F, Sharf, G, Cardoni, A, Noens, L, Pallua, S, Salvucci, M, Nicolatou-Galitis, O, Rosti, G & Mandelli, F 2014, 'International development of an EORTC questionnaire for assessing health-related quality of life in chronic myeloid leukemia patients : The EORTC QLQ-CML24', Quality of Life Research, vol. 23, no. 3, pp. 825-836. https://doi.org/10.1007/s11136-013-0523-5
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