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Quality of Life Research

, Volume 26, Issue 10, pp 2739–2754 | Cite as

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

  • G. Graffigna
  • I. Cecchini
  • M. Breccia
  • E. Capochiani
  • R. Della Seta
  • S. Galimberti
  • A. Melosi
  • F. Simonetti
  • M. Pizzuti
  • S. F. Capalbo
  • F. Falzetti
  • P. Mazza
  • N. Di Renzo
  • L. Mastrullo
  • D. Rapezzi
  • E. Orlandi
  • T. Intermesoli
  • A. Iurlo
  • E. Pungolino
  • M. Pacilli
Article

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.

Keywords

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

Notes

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.

Compliance with ethical standards

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.

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Copyright information

© Springer International Publishing Switzerland 2017

Authors and Affiliations

  • G. Graffigna
    • 1
  • I. Cecchini
    • 2
  • M. Breccia
    • 3
  • E. Capochiani
    • 4
  • R. Della Seta
    • 5
  • S. Galimberti
    • 6
  • A. Melosi
    • 7
  • F. Simonetti
    • 8
  • M. Pizzuti
    • 9
  • S. F. Capalbo
    • 10
  • F. Falzetti
    • 11
  • P. Mazza
    • 12
  • N. Di Renzo
    • 13
  • L. Mastrullo
    • 14
  • D. Rapezzi
    • 15
  • E. Orlandi
    • 16
  • T. Intermesoli
    • 17
  • A. Iurlo
    • 18
  • E. Pungolino
    • 19
  • M. Pacilli
    • 20
  1. 1.Università Cattolica del Sacro CuoreMilanItaly
  2. 2.GfK EuriskoMilanItaly
  3. 3.Policlinico Umberto PrimoRomeItaly
  4. 4.Centro Aziendale di Ematologia, Dipartimento Oncologico di LivornoLeghornItaly
  5. 5.U.O. Oncologia, Ospedale di CarraraCarraraItaly
  6. 6.U.O. Ematologia di PisaPisaItaly
  7. 7.U.O.S. Ematologia, Ospedale di LuccaLuccaItaly
  8. 8.U.O. Medicina, Ospedale della VersiliaCamaioreItaly
  9. 9.Ematologia, Ospedale San CarloPotenzaItaly
  10. 10.S.C. Ematologia, A.O. Universitaria OO.RR.FoggiaItaly
  11. 11.Clinica di Ematologia, Ospedale Santa Maria della MisericordiaPerugiaItaly
  12. 12.Ematologia, Ospedale MoscatiTarantoItaly
  13. 13.UOC di Ematologia e Trapianto di Cellule Staminali, P.O. V. FazziLecceItaly
  14. 14.Ematologia - Ospedale San Gennaro dei PoveriNaplesItaly
  15. 15.S.C. Ematologia, A.S.O. S. Croce e CarleCuneoItaly
  16. 16.Ematologia, Ospedale San Matteo di PaviaPaviaItaly
  17. 17.Ematologia, Ospedali Riuniti di BergamoBergamoItaly
  18. 18.Fondazione Ospedale Maggiore Policlinico Mangiagalli e Regina ElenaMilanItaly
  19. 19.S.C. di Ematologia e Trapianti di Midollo, A.O. Ospedale Niguarda Ca’ GrandaMilanItaly
  20. 20.A.U.S.L. LATINA P.O. Nord - Ospedale Santa Maria GorettiLatinaItaly

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