Treatment-free remission in chronic myeloid leukemia: the patient perspective and areas of unmet needs

Giora Sharf,Celia Marin,Jennifer A Bradley,Zack Pemberton-Whiteley,Felice Bombaci,Rita I O Christensen,Bahija Gouimi,Nigel B Deekes,Mina Daban,Jan Geissler

doi:10.1038/s41375-020-0867-0

Abstract

In CML, treatment-free remission (TFR) refers to having a stable deep molecular response without the need for ongoing tyrosine kinase inhibitor treatment. Whilst recommendations exist about the technical management of stopping and re-starting therapy, much is still unknown about the experiences of those considering and undertaking TFR. This study sought to obtain the patient perspective, identify areas of unmet needs and create recommendations for improvements. Fifty-six percent of patients reported fear or anxiety during treatment discontinuation, whereas only 7% of patients were asked if they needed psychological support during this period. Where patients re-initiated treatment; 59% felt scared or anxious, and 56% felt depressed. Twenty-six percent of re-initiated patients received psychological and/or emotional support at this time. Sixty percent of patients experienced withdrawal symptoms whilst discontinuing treatment, however, 40% of patients who experienced withdrawal symptoms reported that they were not fully supported by their doctor in managing all the symptoms. Healthcare professionals should further consider how they monitor the psychological well-being of patients who are discontinuing or re-initiating treatment, and review what support is offered in response to identified concerns. Surveillance of withdrawal symptoms should be a priority during treatment discontinuation, along with how healthcare professionals assist in the management of these.

Highlights

Supplementary information The online version of this article contains supplementary material, which is available to authorized users.Sealand Region, Denmark 7 Association des malades atteints de leucémies AMAL, Marrakech, Morocco 8 LMC France, Marseille, France 9 LeukaNET e.V, Riemerling, GermanyChronic myeloid leukemia (CML) is a myeloproliferative disorder that is most commonly characterized by the presence of a Philadelphia chromosome, caused by the genetic translocation t(9;22)(q34;q11)
Respondents were grouped into the designated World Health Organization (WHO) regions; 56% (n = 563) were from countries assigned to the European region
Sixty percent (n = 608) of respondents reported that their main place of treatment was a hospital, and 39% (n = 389) of respondents had been living with CML for 10 years or more

Summary

Introduction

Chronic myeloid leukemia (CML) is a myeloproliferative disorder that is most commonly characterized by the presence of a Philadelphia chromosome, caused by the genetic translocation t(9;22)(q34;q11). This genetic abnormality juxtaposes two genes (BCR and ABL1), whose fusion codes for the constitutively active tyrosine kinase is BCRABL1. Targeting this protein with tyrosine kinase inhibitors (TKIs) such as imatinib mesylate revolutionized treatment of this disorder [1]. TKIs are not recommended for female patients who are trying to conceive, during pregnancy or are breastfeeding [14]

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Conclusion