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Gepubliceerd in: Quality of Life Research 3/2014

01-04-2014

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

Auteurs: Fabio Efficace, Michele Baccarani, Massimo Breccia, Susanne Saussele, Gregory Abel, Giovanni Caocci, Francois Guilhot, Kim Cocks, Adel Naeem, Mirjam Sprangers, Simone Oerlemans, Weichu Chie, Fausto Castagnetti, Felice Bombaci, Giora Sharf, Annarita Cardoni, Lucien Noens, Stephan Pallua, Marzia Salvucci, Ourania Nicolatou-Galitis, Gianantonio Rosti, Franco Mandelli

Gepubliceerd in: Quality of Life Research | Uitgave 3/2014

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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.
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Metagegevens
Titel
International development of an EORTC questionnaire for assessing health-related quality of life in chronic myeloid leukemia patients: the EORTC QLQ-CML24
Auteurs
Fabio Efficace
Michele Baccarani
Massimo Breccia
Susanne Saussele
Gregory Abel
Giovanni Caocci
Francois Guilhot
Kim Cocks
Adel Naeem
Mirjam Sprangers
Simone Oerlemans
Weichu Chie
Fausto Castagnetti
Felice Bombaci
Giora Sharf
Annarita Cardoni
Lucien Noens
Stephan Pallua
Marzia Salvucci
Ourania Nicolatou-Galitis
Gianantonio Rosti
Franco Mandelli
Publicatiedatum
01-04-2014
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 3/2014
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-013-0523-5

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