Personal history and quality of life in chronic myeloid leukemia patients: a cross-sectional study using narrative medicine and quantitative analysis

Massimo Breccia, Guendalina Graffigna, Sara Galimberti, Alessandra Iurlo, Ester Pungolino, Michele Pizzuti, Alessandro Maggi, Franca Falzetti, Silvana Franca Capalbo, Tamara Intermesoli, Margherita Maffioli, Chiara Elena, Alessandro Melosi, Federico Simonetti, Enrico Capochiani, Roberta Della Seta, Matteo Pacilli, Mario Luppi, Nicola Di Renzo, Lucia MastrulloElena Trabacchi, Daniele Vallisa, Davide Rapezzi, Ester Maria Orlandi, Carlo Gambacorti-Passerini, Fabio Efficace, Giuliana Alimena

Research output: Contribution to journalArticlepeer-review

Abstract

Background: Tyrosine kinase inhibitors (TKIs) drastically changed the outcome of patients diagnosed with chronic myeloid leukemia (CML). Several reports indicated the advantage of continue long-term adherence associated with positive outcome. Therefore, it is important to better understand from the patient’s standpoint the experience of living with the disease and the related treatment. Objectives: In this study, quantitative analysis and narrative medicine were combined to get insights on this issue in a population of 257 patients with CML in chronic phase treated with TKIs (43 % men, with a median age of 58 years, 27 % aged 31–50 years), followed for a median time of 5 years. Sixty-one percent of patients enrolled were treated in first line, whereas 37 % were treated in second line. Results: The results showed more positive perceptions and acceptance in males compared to females, without impact of disease on relationships. Level of positive acceptance was more evident in elderly compared to younger patients, with a close connection with median time from diagnosis. Overall, female patients reported negative perceptions and an impact of disease on family daily living. The majority of patients understood the importance of continue adherence to treatment, with 27 % resulting less adherent (60 % for forgetfulness), even if well informed and supported by his/her physician. Discussion and conclusions: Narrative medicine, in association to quantitative analysis, can help physicians to understand needs of their patients in order to improve communication.

Original languageEnglish
Pages (from-to)4487-4493
Number of pages7
JournalSupportive Care in Cancer
Volume24
Issue number11
DOIs
Publication statusPublished - Nov 1 2016

Keywords

  • Chronic myeloid leukemia
  • Narrative medicine
  • Tyrosine kinase inhibitors

ASJC Scopus subject areas

  • Oncology

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