International development of an EORTC questionnaire for assessing health-related quality of life in chronic myeloid leukemia patients: the EORTC QLQ-CML24
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- 作者：Fabio Efficace (1)
Michele Baccarani (2)
Massimo Breccia (3)
Susanne Saussele (4)
Gregory Abel (5)
Giovanni Caocci (6)
Francois Guilhot (7)
Kim Cocks (8)
Adel Naeem (9)
Mirjam Sprangers (10)
Simone Oerlemans (11)
Weichu Chie (12)
Fausto Castagnetti (2)
Felice Bombaci (13)
Giora Sharf (14)
Annarita Cardoni (1)
Lucien Noens (15)
Stephan Pallua (16)
Marzia Salvucci (17)
Ourania Nicolatou-Galitis (18)
Gianantonio Rosti (2)
Franco Mandelli (1) - 关键词：Quality of life ; Chronic myeloid leukemia ; Questionnaire
- 刊名：Quality of Life Research
- 出版年：2014
- 出版时间：April 2014
- 年：2014
- 卷：23
- 期：3
- 页码：825-836
- 全文大小：582 KB
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Michele Baccarani (2)
Massimo Breccia (3)
Susanne Saussele (4)
Gregory Abel (5)
Giovanni Caocci (6)
Francois Guilhot (7)
Kim Cocks (8)
Adel Naeem (9)
Mirjam Sprangers (10)
Simone Oerlemans (11)
Weichu Chie (12)
Fausto Castagnetti (2)
Felice Bombaci (13)
Giora Sharf (14)
Annarita Cardoni (1)
Lucien Noens (15)
Stephan Pallua (16)
Marzia Salvucci (17)
Ourania Nicolatou-Galitis (18)
Gianantonio Rosti (2)
Franco Mandelli (1)
1. Italian Group for Adult Hematologic Diseases GIMEMA, Data Center and Health Outcomes Research Unit, Via Benevento, 6, 00161, Rome, Italy
2. Department of Hematology-Oncology, S. Orsola-Malpighi Hospital, University of Bologna, Bologna, Italy
3. Department of Cellular Biotechnologies and Hematology, University of Rome “Sapienza- Rome, Italy
4. Medizinische Fakult?t Mannheim, Universit?t Heidelberg, Mannheim, Germany
5. Division of Population Sciences, Department of Medical Oncology, Dana-Farber Cancer Institute, Boston, MA, USA
6. Department of Internistic Medical Sciences, University of Cagliari, Cagliari, Italy
7. Oncologie Hématologique et Thérapie Cellulaire, Centre Hospitalier Universitaire de Poitiers, Inserm CIC 0802, Poitiers, France
8. York Trials Unit, Department of Health Sciences, University of York, York, UK
9. Department of Hematology, Baghdad Teaching Hospital, Baghdad, Iraq
10. Department of Medical Psychology, University of Amsterdam, Amsterdam, The Netherlands
11. Comprehensive Cancer Centre South, Eindhoven, The Netherlands
12. Department of Public Health, Graduate Institute of Preventive Medicine, College of Public Health, National Taiwan University, Taipei, Taiwan
13. Gruppo AIL Pazienti LMC (Italian Member of CML Advocates Network), Turin, Italy
14. CML Advocates Network, Tel Aviv, Israel
15. Department of Hematology, Ghent University Hospital, Ghent, Belgium
16. Department for Psychiatry and Psychotherapy, Innsbruck Medical University, Innsbruck, Austria
17. Hematology Unit, Azienda Usl Ravenna, Ravenna, Italy
18. Clinic of Hospital Dentistry, Dental Oncology Unit Dental School, University of Athens, Athens, Greece - ISSN：1573-2649
文摘
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.