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

Volumn 23, Issue 3, 2014, Pages 825-836

  Efficace, Fabio ^a   Baccarani, Michele ^b   Breccia, Massimo ^c   Saussele, Susanne ^d   Abel, Gregory ^e   Caocci, Giovanni ^f   Guilhot, Francois ^g   Cocks, Kim ^h   Naeem, Adel ⁱ   Sprangers, Mirjam ^j   Oerlemans, Simone ^k   Chie, Weichu ^l   Castagnetti, Fausto ^b   Bombaci, Felice ^m   Sharf, Giora ⁿ   Cardoni, Annarita ^a   Noens, Lucien ^o   Pallua, Stephan ^p   Salvucci, Marzia ^q   Nicolatou Galitis, Ourania ^r   Rosti, Gianantonio ^b   Mandelli, Franco ^a   more..

^a Data Center and Health Outcomes Research Unit   (Italy)

^b UNIVERSITY OF BOLOGNA   (Italy)

^c SAPIENZA UNIVERSITY OF ROME   (Italy)

^d UNIVERSITY OF HEIDELBERG   (Germany)

^e DANA FARBER CANCER INSTITUTE   (United States)

^f UNIVERSITY OF CAGLIARI   (Italy)

^g POITIERS UNIVERSITY HOSPITAL   (France)

^h UNIVERSITY OF YORK   (United Kingdom)

ⁱ BAGHDAD TEACHING HOSPITAL   (Iraq)

^j UNIVERSITY OF AMSTERDAM   (Netherlands)

^k The Netherlands   (Netherlands)

^l NATIONAL TAIWAN UNIVERSITY   (Taiwan)

^m Gruppo AIL Pazienti LMC   (Italy)

ⁿ CML Advocates Network   (Israel)

^o GHENT UNIVERSITY HOSPITAL   (Belgium)

^p INNSBRUCK MEDICAL UNIVERSITY   (Austria)

^q Hematology Unit Azienda Usl Ravenna   (Italy)

^r UNIVERSITY OF ATHENS   (Greece)

more..

Author keywords

Chronic myeloid leukemia; Quality of life; Questionnaire

Indexed keywords

BENZAMIDE DERIVATIVE; IMATINIB; PIPERAZINE DERIVATIVE; PROTEIN KINASE INHIBITOR; PYRIMIDINE DERIVATIVE;

ADULT; AGED; ARTICLE; CHRONIC MYELOID LEUKEMIA; DEMOGRAPHY; EQUIPMENT; FEMALE; HEALTH STATUS INDICATOR; HUMAN; INTERNATIONAL COOPERATION; INTERVIEW; KARNOFSKY PERFORMANCE STATUS; MALE; MIDDLE AGED; MULTICENTER STUDY; PSYCHOLOGICAL ASPECT; PSYCHOMETRY; QUALITY OF LIFE; QUESTIONNAIRE; SOCIAL CLASS; STANDARD; VERY ELDERLY; YOUNG ADULT;

ADULT; AGED; AGED, 80 AND OVER; BENZAMIDES; FEMALE; HEALTH STATUS INDICATORS; HUMANS; INTERNATIONAL COOPERATION; INTERVIEWS AS TOPIC; KARNOFSKY PERFORMANCE STATUS; LEUKEMIA, MYELOGENOUS, CHRONIC, BCR-ABL POSITIVE; MALE; MIDDLE AGED; PIPERAZINES; PROTEIN KINASE INHIBITORS; PSYCHOMETRICS; PYRIMIDINES; QUALITY OF LIFE; QUESTIONNAIRES; RESIDENCE CHARACTERISTICS; SOCIAL CLASS; YOUNG ADULT;

EID: 84897059542     PISSN: 09629343     EISSN: None     Source Type: Journal    
DOI: 10.1007/s11136-013-0523-5     Document Type: Article

References (30)

1. Aaronson, N. K.; Ahmedzai, S.; Bergman, B.; et al. (1993). The european organization for research and treatment of cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. Journal of the National Cancer Institute, 85, 365-376.
2. American Cancer Society: 2015 goals of the American Cancer Society. http://relay.acsevents.org/site/DocServer/ACS%20Mission%20Statement- 2015%20Goals.pdf?docID-57443.
3. Basch, E.; Abernethy, A. P.; Mullins, C. D.; et al. (2012). Recommendations for incorporating patient-reported outcomes into clinical comparative effectiveness research in adult oncology. Journal of Clinical Oncology, 30, 4249-4255.
4. Bjorkholm, M.; Ohm, L.; Eloranta, S.; et al. (2011). Success story of targeted therapy in chronic myeloid leukemia: a population-based study of patients diagnosed in Sweden from 1973 to 2008. Journal of clinical oncology: Official journal of the American Society of Clinical Oncology, 29, 2514-2520.
5. Blazeby, J.; Sprangers, MA.; Cull, A. (2002) EORTC Quality of life group: guidelines for developing questionnaire modules. Report 3rd ed. Brussels: EORTC Quality of Life Group.
6. Cella, D.; Jensen, S. E.; Webster, K.; et al. (2012). Measuring health-related quality of life in Leukemia: The Functional assessment of cancer Therapy-Leukemia (FACT-Leu) Questionnaire. Value Health, 15, 1051-1058.
7. Cortes, J.; Hochhaus, A.; Hughes, T.; & Kantarjian, H. (2011). Front-line and salvage therapies with tyrosine kinase inhibitors and other treatments in chronic myeloid leukemia. Journal of Clinical Oncology, 29, 524-531.
8. Dewolf, L.; Koller, M.; Velikova, G.; Johnson, C.; Scott, N.; Bottomley, A on behalf of the EORTC Quality of Life Group. EORTC Quality Of Life Group Translation Procedure. Report 3rd Ed. Brussels, 2009. http://groups.eortc.be/ qol/sites/default/files/archives/translation-manual-2009.pdf.
9. Efficace, F.; Baccarani, M.; Breccia, M.; et al. (2011). Health-related quality of life in chronic myeloid leukemia patients receiving long-term therapy with imatinib compared with the general population. Blood, 118, 4554-4560.
10. Efficace, F.; Baccarani, M.; Breccia, M.; et al. (2013). Chronic fatigue is the most important factor limiting health-related quality of life of chronic myeloid leukemia patients treated with imatinib. Leukemia, 27, 1511-1519.
11. Efficace, F.; Breccia, M.; Saussele, S.; et al. (2012). Which health-related quality of life aspects are important to patients with chronic myeloid leukemia receiving targeted therapies and to health care professionals? GIMEMA and EORTC Quality of Life Group. Annals of Hematology, 91, 1371-1381.
12. Efficace, F.; Cardoni, A.; Cottone, F.; et al. (2013). Tyrosine-kinase inhibitors and patient-reported outcomes in chronic myeloid leukemia: A systematic review. Leukemia Research, 37, 206-213.
13. Efficace, F.; Cocks, K.; Breccia, M.; et al. (2012). Time for a new era in the evaluation of targeted therapies for patients with chronic myeloid leukemia: inclusion of quality of life and other patient-reported outcomes. Critical Reviews in Oncology/Hematology, 81, 123-135.
14. Hahn, E. A.; Glendenning, G. A.; Sorensen, M. V.; et al. (2003). Quality of life in patients with newly diagnosed chronic phase chronic myeloid leukemia on imatinib versus interferon alfa plus low-dose cytarabine: results from the IRIS Study. Journal of Clinical Oncology, 21, 2138-2146.
15. Hehlmann, R.; Lauseker, M.; Jung-Munkwitz, S.; et al. (2011). Tolerability-adapted imatinib 800 mg/d versus 400 mg/d versus 400 mg/d plus interferon-alpha in newly diagnosed chronic myeloid leukemia. Journal of Clinical Oncology, 29, 1634-1642.
16. Hochhaus, A. (2011). Managing chronic myeloid leukemia as a chronic disease. American Society of hematology Educational Program Book. Hematology:128-135, doi: 10.1182/asheducation-2011.1.128.
17. Johnson, C.; Aaronson, N.; Blazeby, J.; Bottomley, A.; Fayers, P.; Koller, M.; et al. (2011) Guidelines for developing Questionnaire modules. Report 4th Ed. Brussels.
18. Kantarjian, H. M.; Hochhaus, A.; Saglio, G.; et al. (2011). Nilotinib versus imatinib for the treatment of patients with newly diagnosed chronic phase, Philadelphia chromosome-positive, chronic myeloid leukaemia: 24-month minimum follow-up of the phase 3 randomised ENESTnd trial. Lancet Oncol, 12, 841-851.
19. Kantarjian, H. M.; Shah, N. P.; Cortes, J. E.; et al. (2012). Dasatinib or imatinib in newly diagnosed chronic-phase chronic myeloid leukemia: 2-year follow-up from a randomized phase 3 trial (DASISION). Blood, 119, 1123-1129.
20. Kantarjian, H.; Shah, N. P.; Hochhaus, A.; et al. (2010). Dasatinib versus imatinib in newly diagnosed chronic-phase chronic myeloid leukemia. New England Journal of Medicine, 362, 2260-2270.
21. Marin, D. (2012) Initial choice of therapy among plenty for newly diagnosed chronic myeloid leukemia. American Society of Hematology Educational Program Book. Hematology. 2012:115-121, doi: 10.1182/asheducation-2012.1.115.
22. Marin, D.; Bazeos, A.; Mahon, F. X.; et al. (2010). Adherence is the critical factor for achieving molecular responses in patients with chronic myeloid leukemia who achieve complete cytogenetic responses on imatinib. Journal of Clinical Oncology, 28, 2381-2388.
23. National Cancer Institute. The NCI strategic plan for leading the nation. to eliminate the suffering and death due to cancer. National Institutes of Health Publication No. 06-5773. http://strategicplan.nci.nih.gov/pdf/nci-2007
24. Noens, L.; van Lierde, M. A.; De Bock, R.; et al. (2009). Prevalence, determinants, and outcomes of nonadherence to imatinib therapy in patients with chronic myeloid leukemia: the ADAGIO study. Blood, 113, 5401-5411.
25. Nunnally, J. C. (1978). Psychometric theory (2nd ed.). New York: McGraw-Hill.
26. Phillips, K. M.; Pinilla-Ibarz, J.; Sotomayor, E.; et al. (2013). Quality of life outcomes in patients with chronic myeloid leukemia treated with tyrosine kinase inhibitors: a controlled comparison. Supportive Care in Cancer, 21, 1097-1103.
27. Pinilla-Ibarz, J.; Cortes, J.; & Mauro, M. J. (2011). Intolerance to tyrosine kinase inhibitors in chronic myeloid leukemia: Definitions and clinical implications. Cancer, 117, 688-697.
28. Saglio, G.; Kim, D. W.; Issaragrisil, S.; et al. (2010). Nilotinib versus imatinib for newly diagnosed chronic myeloid leukemia. New England Journal of Medicine, 362, 2251-2259.
29. US Food and Drug Administration: Guidance for Industry. Patient-reported outcome measures: use in medical product development to support labeling claims. u.s. department of health and human services food and drug administration December, 2009 http://www.fda.gov/downloads/Drugs/ GuidanceComplianceRegulatoryInformation/Guidances/UCM193282.pdf.
30. Williams, L. A.; Gonzalez, A. G.; Ault, P.; et al. (2013). Measuring the symptom burden associated with the treatment of chronic myeloid leukemia. Blood, 122, 641-647.