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

Abstract

Purpose

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.

Methods

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).

Results

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.

Conclusions

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.

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Funding

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.

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Correspondence to G. Graffigna.

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

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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.

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

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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). https://doi.org/10.1007/s11136-017-1611-8

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Keywords

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