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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

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Abstract

The objective of this study was to investigate the health-related quality of life (HRQOL) aspects valued the most by patients with chronic myeloid leukemia (CML) receiving targeted therapies (TT), and to compare their perception with that of health-care professionals’ (HCPs). Semi-structured interviews were conducted with 137 CML patients receiving TT from five different countries. An additional sample of 99 CML patients, completing an online interview, was considered for supportive analyses. A sample of 59 HCPs from 12 countries also participated in the study. Patients and HCPs were asked to rate and rank the importance of a predefined list of 74 HRQOL aspects of potential relevance for CML patients. Patients and HCPs agreed that the following five aspects are most important: fatigue, muscle cramps, swelling, worries, and uncertainty about health condition in the future, and importance of social support in coping with the disease. However, the difference in rankings between the two groups was substantial with respect to other HRQOL aspects investigated. Patients valued some issues related to symptoms much higher than HCPs, thus suggesting that a better symptom management could be the crucial aspects to improve HRQOL of CML patients.

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Acknowledgments

We are in debt to all the patients who participated in this study and we acknowledge the essential contribution of the “Associazione Italiana contro le Leucemie, Linfomi e Mieloma (AIL)”—“Chronic Myeloid Group” which provided logistic and administrative support in the online survey used in this study. The study was supported in part by a grant by the EORTC Quality of Life Group. Susanne Saussele is supported by DJCLS R 10/20. We would like also to acknowledge Dr. Marcos Fisfis, Dr. Emmanuil Vardas, and Dr. Erofili Papadopoulou, who contributed to the study in the Dental Oncology Unit in Athens.

Conflict of interest

The authors declare no conflict of interest.

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Authors and Affiliations

  1. Health Outcomes Research Unit, Italian Group for Adult Hematologic Diseases (GIMEMA), GIMEMA Data Center, Via Benevento, 6, 00161, Rome, Italy

    Fabio Efficace, Annarita Cardoni, Marco Vignetti & Franco Mandelli

  2. Department of Cellular Biotechnologies and Hematology, Sapienza University, Rome, Italy

    Massimo Breccia

  3. Medizinische Fakultät Mannheim, Universität Heidelberg, Mannheim, Germany

    Susanne Saussele & Ute Kossak-Roth

  4. Department of Internistic Medical Sciences, University of Cagliari, Cagliari, Italy

    Giovanni Caocci

  5. Graduate Institute of Preventive Medicine and Department of Public Health, College of Public Health, National Taiwan University, Taipei, Taiwan

    Weichu Chie

  6. Department of Hematology, University of Baghdad, Baghdad, Iraq

    Adel Naeem

  7. Dental Oncology Unit, Clinic of Hospital Dentistry, School of Dentistry, University of Athens, Athens, Greece

    Ourania Nicolatou-Galitis

  8. York Trials Unit, University of York, York, UK

    Kim Cocks

  9. Department of Haematology and Oncology ‘L. e A. Seràgnoli’,St. Orsola-Malpighi Hospital, University of Bologna, Bologna, Italy

    Michele Baccarani

  10. Department of Medical Psychology, University of Amsterdam, Amsterdam, The Netherlands

    Mirjam Sprangers

Authors
  1. Fabio Efficace
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  2. Massimo Breccia
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  3. Susanne Saussele
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  4. Ute Kossak-Roth
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  5. Annarita Cardoni
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  6. Giovanni Caocci
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  7. Weichu Chie
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  8. Adel Naeem
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  9. Ourania Nicolatou-Galitis
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  10. Kim Cocks
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  11. Marco Vignetti
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  12. Michele Baccarani
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  13. Franco Mandelli
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  14. Mirjam Sprangers
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Corresponding author

Correspondence to Fabio Efficace.

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Efficace, F., Breccia, M., Saussele, S. et al. Which health-related quality of life aspects are important to patients with chronic myeloid leukemia receiving targeted therapies and to health care professionals?. Ann Hematol 91, 1371–1381 (2012). https://doi.org/10.1007/s00277-012-1458-6

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  • DOI: https://doi.org/10.1007/s00277-012-1458-6

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