The Patient Journey in Chronic Myeloid Leukemia Patients on Tyrosine Kinase Inhibitor Therapies: Qualitative Insights Using a Global Ethnographic Approach

  • François Guilhot
  • John Coombs
  • Tomasz Szczudlo
  • Oleg Zernovak
  • Marc Paolantonio
  • Christina Bender
  • Nancy J. MacdonaldEmail author
  • Ari Shapiro
Original Research Article



The advent and approval of tyrosine kinase inhibitors (TKIs) have dramatically improved the life expectancy of patients with chronic myeloid leukemia (CML), which has been transformed into a chronically manageable disease.


The objective was to qualitatively assess the effects of diagnosis and treatment on patients with CML to offer recommendations for health-care providers (HCPs) for the better support of patients.


By use of an ethnographic approach based on in-home interviews, photo journals, and an optional telephone debriefing interview, this study included 50 patients with CML from Brazil, France, Germany, Russia, and Spain, including patients within 18 months of diagnosis and receiving frontline TKI therapy (n = 20), patients between >18 months and 7 years from diagnosis and receiving ongoing frontline therapy (n = 20), and patients who switched to second- or third-line TKI therapy (n = 10). In-home interviews were designed to address patient perceptions and experiences regarding such issues as adherence, disease knowledge, disease management, and relationships with HCPs. Transcripts from these interviews and other data were analyzed to identify similar patterns and themes experienced by patients with CML.


The investigation generated a five-stage, patient-centered model of the experience of the patient throughout diagnosis, treatment, and management of CML: crisis, hope, adaptation, new normal, and uncertainty. Patients proceeded through these stages in the course of their disease management. The stages were affected by the patients’ emotional and social experiences, their knowledge about CML, their positive experiences with their HCPs and/or treatment, and their optimism about their long-term prognosis.


We identified five common stages experienced by patients with CML and suggest several recommendations for HCPs on the management of patients through their disease journey. By providing support, education, and reassurance, HCPs can help patients as they move through the early stages of crisis and hope. When patients are in the adaptation and new-normal stages, HCPs can help patients achieve and maintain a new normality by setting expectations for the risks/benefits of long-term chronic drug therapy and disease monitoring and by continuing to support patient adherence.


Imatinib Chronic Myeloid Leukemia Dasatinib Nilotinib Normal Stage 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.



This study was supported by Novartis Pharmaceuticals Corporation and conducted by Nancy Macdonald and Ari Shapiro while employed by Hall & Partners Healthcare. François Guilhot acted as a consultant for and received honoraria from Novartis Pharmaceuticals. John Coombs and Tomasz Szczudlo are employees and shareholders of Novartis Pharmaceuticals. Oleg Zernovak and Marc Paolantonio were employees of Novartis Pharmaceuticals at the time the research was conducted. Christina Bender is an employee of Novartis Pharmaceuticals. Nancy J. Macdonald has nothing to disclose. Ari Shapiro received funding for this research. Financial support for medical editorial assistance was provided by Novartis Pharmaceuticals. We thank Nicole Parker, PhD, and Candice L. Willmon, PhD, for medical editorial assistance with this manuscript.


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Copyright information

© Springer International Publishing Switzerland 2013

Authors and Affiliations

  • François Guilhot
    • 1
  • John Coombs
    • 2
  • Tomasz Szczudlo
    • 2
  • Oleg Zernovak
    • 2
  • Marc Paolantonio
    • 2
  • Christina Bender
    • 2
  • Nancy J. Macdonald
    • 3
    Email author
  • Ari Shapiro
    • 3
  1. 1.CIC 802 INSERM, CHU de PoitiersPoitiersFrance
  2. 2.Novartis Pharmaceuticals CorporationEast HanoverUSA
  3. 3.Flince Research + DesignNYUSA

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