Psychological Experience of Living With CML: From the Patient Perspective
Posted: Monday, March 25, 2019
Through qualitative analysis, a team of researchers were able to understand the patient perspective in terms of the experience of having chronic myeloid leukemia (CML) and the relationship between being involved in a clinical trial or stopping the trial. Lidia Borghi, PhD, of the University of Milan, Italy, and colleagues published their findings in Frontiers of Psychology.
“Clinicians should consider that the way in which CML patients feel engaged in a clinical trial, create expectancies about treatment-free remission (TFR), or experience that TFR failure is linked to the process of coping with the diagnosis, which is characterized by ambivalence,” the authors concluded.
Featured in the study was an Italian subset of patients from the larger ENESTPath international study. Of the 25 patients who had CML and experienced TFR failure, 14 were interviewed, and the results were analyzed using the Interpretive Phenomenological Analysis. Four main points in diagnosis were assessed: (1) the moment of diagnosis; (2) the experience of the illness journey (both disease and treatment); (3) the moment of TFR failure; and (4) the impact of the disease, treatment, and relapse on the patient’s life.
Patients described being diagnosed as having a traumatic break that created a dichotomy in the way they viewed life. On one hand, patients experienced the negative diagnosis of cancer, but they also had a treatment and life expectancy to be grateful for. Additionally, patients described the treatment as a reminder of the reality of the disease, but they were also thankful for that treatment. This process created a sense of ambivalence and gave meaning to the way patients cognitively and emotionally experienced their disease.
“There is a need to develop strategies to cope with patients’ emotional experience and guarantee that their psycho-emotional wellbeing is one of the objectives of each new clinical trial,” the authors concluded.
Disclosure: The study authors’ disclosure information can be found at frontiersin.org.