Recovering from chronic myeloid leukemia: the patients’ perspective seen through the lens of narrative medicine



The main objective of this study is to gain a deeper understanding of how patients suffering from chronic myeloid leukemia (CML) cope with their illness. The study aims to reconstruct the subjective meaning-making process related to CML in order to gain insights into the impact the disease has on patients’ emotions and everyday lives, as well as to explore the psychological impact of their being presented with the chance to suspend their therapy and recover from the disease.


Data were gathered from a qualitative study conducted in Italy on 158 Italian CML patients. Basing the study on the narrative inquiry approach, the patients were required to describe their patient journey in a qualitative narrative diary. These contained prompts to elicit the free expression of their needs, expectations, and priorities. A lexicographic analysis was carried out with T-LAB software and in particular a thematic analysis of elementary contexts (TAECs) and a word association analysis (WAA).


The TAEC detected four thematic clusters related to two factors (temporal frame and contextual setting) that explained the variance among the narratives. The WAA evidenced a wide variety of emotions, both positive and negative, as patients reacted to the possibility of interrupting their therapy.


A better understanding of patients’ experiences can offer insights into promoting the development of more sustainable healthcare services and into therapeutic innovation aimed at improving patients’ quality of life and at engaging them more in their treatment. The findings of this study can also help make medical professionals more aware of the patient’s burden and help them identify potential interactions and emotional levers to improve clinical relationships.

This is a preview of subscription content, log in to check access.

Fig. 1


  1. 1.

    Sawyers, C. L., Hochhaus, A., Feldman, E., Goldman, J. M., Miller, C. B., Ottmann, O. G., et al. (2002). Imatinib induces hematologic and cytogenetic responses in patients with chronic myelogenous leukemia in myeloid blast crisis: Results of a phase II study. Blood, 99(10), 3530–3539.

    CAS  Article  PubMed  Google Scholar 

  2. 2.

    Hanfstein, B., Müller, M. C., Hehlmann, R., Erben, P., Lauseker, M., Fabarius, A., et al. (2012). Early molecular and cytogenetic response is predictive for long-term progression-free and overall survival in chronic myeloid leukemia (CML). Leukemia, 26(9), 2096–2102. doi:10.1038/leu.2012.85.

    CAS  Article  PubMed  Google Scholar 

  3. 3.

    Steegmann, J. L., Baccarani, M., Breccia, M., Casado, L. F., García-Gutiérrez, V., Hochhaus, A., et al. (2016). European LeukemiaNet recommendations for the management and avoidance of adverse events of treatment in chronic myeloid leukaemia. Leukemia, 2016(3), 1648–1671.

    Article  Google Scholar 

  4. 4.

    Efficace, F., Baccarani, M., Breccia, M., Alimena, G., Rosti, G., Cottone, F., 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(17), 4554–4560.

    CAS  Article  PubMed  Google Scholar 

  5. 5.

    Breccia, M., & Efficace, F. (2016). Health-related quality of life outcomes in chronic myeloid leukemia patients treated with second generation tyrosine kinase inhibitors: Do we know enough? Current Medical Research and Opinion, 32(8), 1453–1454. doi:10.1080/03007995.2016.1185399.

    Article  PubMed  Google Scholar 

  6. 6.

    Baccarani, M., Efficace, F., & Rosti, G. (2014). Moving towards patient-centered decision-making in chronic myeloid leukemia: Assessment of quality of life and symptom burden. Haematologica, 99(2), 205–208. doi:10.3324/haematol.2013.094045.

    Article  PubMed  PubMed Central  Google Scholar 

  7. 7.

    Barello, S., & Graffigna, G. (2015). Engagement-sensitive decision making: Training doctors to sustain patient engagement in medical consultations. In G. Graffigna, S. Barello, & S. Triberti (Eds.), Patient engagement: A consumer-centered model to innovate healthcare (pp. 78–89). Berlin: DeGruyter Open.

    Google Scholar 

  8. 8.

    Shortell, S. M. (2013). Bridging the divide between health and health care. JAMA, 309(11), 1121–1122. doi:10.1001/jama.2013.887.

    CAS  Article  PubMed  Google Scholar 

  9. 9.

    Street, R. L., Jr., Gordon, H. S., Ward, M. M., Krupat, E., & Kravitz, R. L. (2005). Patient participation in medical consultations: Why some patients are more involved than others. Medical Care, 43(10), 960–969.

    Article  PubMed  Google Scholar 

  10. 10.

    Barello, S., & Graffigna, G. (2015). Patient engagement in healthcare: Pathways for shared decision-making. Neuropsychological Trends, 17, 53–65. doi:10.7358/neur-2015-017.

    Article  Google Scholar 

  11. 11.

    Guilhot, F., Coombs, J., Szczudlo, T., Zernovak, O., Paolantonio, M., Christina, B., et al. (2013). The patient journey in chronic myeloid leukemia patients on tyrosine kinase inhibitor therapies: Qualitative insights using a global ethnographic approach. The Patient: Patient-Centered Outcomes Research, 6(2), 81–92.

    Article  Google Scholar 

  12. 12.

    Baccarani, M., Saglio, G., Goldman, J., Hochhaus, A., Simonsson, B., Appelbaum, F., et al. (2006). Evolving concepts in the management of chronic myeloid leukemia: Recommendations from an expert panel on behalf of the European LeukemiaNet. Blood, 108(6), 1809–1820.

    CAS  Article  PubMed  Google Scholar 

  13. 13.

    Efficace, F., Baccarani, M., Breccia, M., Cottone, F., Alimena, G., Deliliers, G. L., 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(7), 1511–1519.

    CAS  Article  PubMed  Google Scholar 

  14. 14.

    Breccia, M., & Efficace, F. (2016). Health-related quality of life outcomes in chronic myeloid leukemia patients treated with second generation tyrosine kinase inhibitors: Do we know enough? Current Medical Research and Opinion. doi:10.1080/03007995.2016.1185399.

    PubMed  Google Scholar 

  15. 15.

    Cortes, J., De Souza, C., Ayala-Sanchez, M., Bendit, I., Best-Aguilera, C., Enrico, A., et al. (2010). Current patient management of chronic myeloid leukemia in Latin America. Cancer, 116(21), 4991–5000. doi:10.1002/cncr.25273.

    Article  PubMed  PubMed Central  Google Scholar 

  16. 16.

    Rood, J. A. J., Van Zuuren, F. J., Stam, F., Van Der Ploeg, T., Huijgens, P. C., & Verdonck-de Leeuw, I. M. (2015). Cognitive coping style (monitoring and blunting) and the need for information, information satisfaction and shared decision making among patients with haematological malignancies. Psycho-Oncology, 24(5), 564–571. doi:10.1002/pon.3699.

    Article  PubMed  Google Scholar 

  17. 17.

    Efficace, F., Rosti, G., Aaronson, N., Cottone, F., Angelucci, E., Molica, S., et al. (2014). Patient- versus physician-reporting of symptoms and health status in chronic myeloid leukemia. Haematologica, 99(4), 788–793. doi:10.3324/haematol.2013.093724.

    Article  PubMed  PubMed Central  Google Scholar 

  18. 18.

    Coulter, A. (2011). Engaging patients in healthcare. New York: University Press.

    Google Scholar 

  19. 19.

    Kleinman, A. (1978). Concepts and a model for the comparison of medical systems as cultural systems. Social Science and Medicine Part B: Medical Anthropology, 12, 85–93.

    CAS  Article  Google Scholar 

  20. 20.

    Graffigna, G., Barello, S., Riva, G., & Bosio, A. C. (2014). Patient engagement: The key to redesign the exchange between the demand and supply for healthcare in the era of active ageing. Studies in Health Technology and Informatics, 203, 85–95.

    PubMed  Google Scholar 

  21. 21.

    Charon, R. (2012). At the membranes of care: Stories in narrative medicine. Academic Medicine, 87(3), 342–347. doi:10.1097/ACM.0b013e3182446fbb.

    Article  PubMed  PubMed Central  Google Scholar 

  22. 22.

    Vegni, E., Zannini, L., Visioli, S., & Moja, E. A. (2001). Giving bad news: A GPs’ narrative perspective. Supportive Care in Cancer, 9(5), 390–396.

    CAS  Article  PubMed  Google Scholar 

  23. 23.

    Charon, R. (2007). What to do with stories: The sciences of narrative medicine. Canadian Family Physician, 53(8), 1265–1267.

    PubMed  PubMed Central  Google Scholar 

  24. 24.

    Greenhalgh, T. (1999). Narrative based medicine in an evidence based world. BMJ, 318(7179), 323–325.

    CAS  Article  PubMed  PubMed Central  Google Scholar 

  25. 25.

    Vegni, E., Visioli, S., & Moja, E. A. (2005). When talking to the patient is difficult: The physician’s perspective. Communication and Medicine, 2(1), 69–76. doi:10.1515/come.2005.2.1.69.

    Article  PubMed  Google Scholar 

  26. 26.

    Greenhalgh, T., & Hurwitz, B. (1999). Why study narrative? BMJ, 318(7175), 48–50.

    CAS  Article  PubMed  PubMed Central  Google Scholar 

  27. 27.

    Elwyn, G., Edwards, A., Kinnersley, P., & Grol, R. (2000). Shared decision making and the concept of equipoise: The competences of involving patients in healthcare choices. British Journal of General Practice, 50(460), 892–899.

    CAS  PubMed  PubMed Central  Google Scholar 

  28. 28.

    Hibbard, J. H., Stockard, J., Mahoney, E. R., & Tusler, M. (2004). Development of the patient activation measure (PAM): Conceptualizing and measuring activation in patients and consumers. Health Services Research, 39(4), 1005–1026. doi:10.1111/j.1475-6773.2004.00269.x.

    Article  PubMed  PubMed Central  Google Scholar 

  29. 29.

    Frank, A. W. (1995). The wounded storyteller. Chicago: University of Chicago Press.

    Google Scholar 

  30. 30.

    Riley, T., & Hawe, P. (2005). Researching practice: The methodological case for narrative inquiry. Health Education Research, 20(2), 226–236.

    Article  PubMed  Google Scholar 

  31. 31.

    Muller, J. H. (1999). Narrative approaches to qualitative research in primary care. In B. F. Crabtree & W. L. Miller (Eds.), Doing qualitative research (pp. 221–238). Thousand Oaks, CA: Sage Publications.

    Google Scholar 

  32. 32.

    Frank, A. W. (1998). Just listening: Narrative and deep illness. Families, Systems, and Health, 16(3), 197.

    Article  Google Scholar 

  33. 33.

    Mishler, E. G. (1996). Language, meaning, and narrative analysis. In Research interviewing. Context and narrative (pp. 66–116). Cambridge, MA: Harvard University Press.

  34. 34.

    Smith, C. P. (2000). Content analysis and narrative analysis. In H. T. Reis & C. M. Judd (Eds.), Handbook of research methods in social and personality psychology. Cambridge: Cambridge University Press.

    Google Scholar 

  35. 35.

    Bellardita, L., Graffigna, G., Donegani, S., Villani, D., Villa, S., Tresoldi, V., et al. (2012). Patient’s choice of observational strategy for early-stage prostate cancer. Neuropsychological Trends, 12(1), 107–116.

    Google Scholar 

  36. 36.

    Gambetti, R., & Graffigna, G. (2010). The concept of engagement: A systematic analysis of the ongoing debate. International Journal of Marketing Research, 52(6), 7.

    Google Scholar 

  37. 37.

    Lancia, F. (2004). Strumenti per l’analisi dei testi. Introduzione all’uso di T-LAB. Milano: Franco Angeli.

    Google Scholar 

  38. 38.

    Sontag, S., & Broun, H. H. (1977). Illness as metaphor (p. 343). N. Hollywood: Center for Cassette Studies.

    Google Scholar 

  39. 39.

    Skott, C. (2002). Expressive metaphors in cancer narratives. Cancer Nursing, 25(3), 230–235.

    Article  PubMed  Google Scholar 

  40. 40.

    Olsson, C., Sandin-Bojö, A. K., Bjuresäter, K., & Larsson, M. (2015). Patients treated for hematologic malignancies: Affected sexuality and health-related quality of life. Cancer Nursing, 38(2), 99–110.

    Article  PubMed  Google Scholar 

  41. 41.

    Cella, D., Nowinski, C. J., & Frankfurt, O. (2014). The impact of symptom burden on patient quality of life in chronic myeloid leukemia. Oncology, 87(3), 133–147.

    Article  PubMed  Google Scholar 

  42. 42.

    Prochaska, J. O., & DiClemente, C. C. (1986). Toward a comprehensive model of change. New York: Springer.

    Google Scholar 

  43. 43.

    Prochaska, J. O., & Velicer, W. F. (1997). The transtheoretical model of health behavior change. American Journal of Health Promotion, 12(1), 38–48.

    CAS  Article  PubMed  Google Scholar 

  44. 44.

    Graffigna, G., Barello, S., & Triberti, S. (2015). Patient engagement: a consumer centered approach. Warsaw: De Gruyter Open.

    Google Scholar 

  45. 45.

    Kübler-Ross, E. (2009). On death and dying: What the dying have to teach doctors, nurses, clergy and their own families. New York: Scribner.

    Google Scholar 

  46. 46.

    Barello, S., & Graffigna, G. (2015). Engaging patients to recover life projectuality: An Italian cross-disease framework. Quality of Life Research, 24(5), 1087–1096.

    Article  PubMed  Google Scholar 

  47. 47.

    Andresen, R., Oades, L., & Caputi, P. (2003). The experience of recovery from schizophrenia: Towards an empirically validated stage model. Australian and New Zealand Journal of Psychiatry, 37(5), 586–594.

    Article  PubMed  Google Scholar 

  48. 48.

    Goldberg, R. J. (1983). Systematic understanding of cancer patients who refuse treatment. Psychotherapy and Psychosomatics, 39(3), 180–189.

    CAS  Article  PubMed  Google Scholar 

  49. 49.

    Charon, R. (2001). Narrative medicine: A model for empathy, reflection, profession, and trust. JAMA, 286(15), 1897–1902.

    CAS  Article  PubMed  Google Scholar 

Download references


This study was liberally funded by Novartis Italia.

Author Contribution

GG and IC designed, conducted, and managed the entire study. GG wrote the first draft of the paper. BM thoroughly revised the paper and offered insights for improving the analysis. CE, DSR, GS, MA, SF, PM, CS, FF, MP, DRN, ML, RD, OE, IT, IA, PE, and PM recruited patients for the study and supported the data collection. They also revised the paper and made suggestions for improvement of its medical background.

Author information



Corresponding author

Correspondence to G. Graffigna.

Ethics declarations

Conflict of interest

All authors declare that they have no conflict of interest to be disclosed.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the Institutional and/or National Research Committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.

Informed consent

Informed consent was obtained from all individual participants included in the study.

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

Graffigna, G., Cecchini, I., Breccia, M. et al. Recovering from chronic myeloid leukemia: the patients’ perspective seen through the lens of narrative medicine. Qual Life Res 26, 2739–2754 (2017).

Download citation


  • Chronic myeloid leukemia
  • Illness experience
  • Patients’ psychological representations
  • Narrative inquiry approach
  • Patient engagement