title: The patient journey in chronic myeloid leukemia patients on tyrosine kinase inhibitor therapies: qualitative insights using a global ethnographic approach.
abstract: BACKGROUND
  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.
  
  
  OBJECTIVE
  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.
  
  
  METHODS
  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.
  
  
  RESULTS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: CHU de Poitiers, Poitiers, France.
authors.forename: François
authors.initials: F
authors.lastname: Guilhot
authors.forename: John
authors.initials: J
authors.lastname: Coombs
authors.forename: Tomasz
authors.initials: T
authors.lastname: Szczudlo
authors.forename: Oleg
authors.initials: O
authors.lastname: Zernovak
authors.forename: Marc
authors.initials: M
authors.lastname: Paolantonio
authors.forename: Christina
authors.initials: C
authors.lastname: Bender
authors.forename: Nancy J
authors.initials: NJ
authors.lastname: Macdonald
authors.forename: Ari
authors.initials: A
authors.lastname: Shapiro
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000884:Anthropology, Cultural; D001938:Brazil; D019468:Disease Management; D004644:Emotions; D005060:Europe; D005260:Female; D006801:Humans; D015464:Leukemia, Myelogenous, Chronic, BCR-ABL Positive / Q000188:drug therapy / Q000523:psychology*; D008016:Life Change Events; D008297:Male; D008875:Middle Aged; D047428:Protein Kinase Inhibitors / Q000627:therapeutic use; D011505:Protein-Tyrosine Kinases / Q000037:antagonists & inhibitors; D036301:Qualitative Research; D012944:Social Support; D035501:Uncertainty
chemical_list: D047428:Protein Kinase Inhibitors; D011505:Protein-Tyrosine Kinases