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. 2020 Aug;34(8):2102-2112.
doi: 10.1038/s41375-020-0867-0. Epub 2020 May 26.

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

Giora Sharf  1   2 , Celia Marin  3 , Jennifer A Bradley  4 , Zack Pemberton-Whiteley  1   5 , Felice Bombaci  1   6 , Rita I O Christensen  1   7 , Bahija Gouimi  1   8 , Nigel B Deekes  1 , Mina Daban  1   9 , Jan Geissler  1   10
Affiliations

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

Giora Sharf et al. Leukemia. 2020 Aug.

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.

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Conflict of interest statement

GS reports: consultancy for Leukemia Patient Advocates Foundation, Israeli CML patient organization, Novartis, Incyte, AbbVie, Takeda, Bristol-Myers Squibb, Celgene and Pfizer; advisory board membership for CML Advocates Network, Leukemia Patient Advocates Foundation and Israeli CML patient organization; organizational grant funding from Novartis, Incyte, Amgen, Bristol-Myers Squibb, Celgene, AOP Orphan, CTI, Medison, Roche, Janssen, Pfizer, Takeda and Gilead. CM reports: employment for Leukemia Patient Advocates Foundation; consultancy for Psoriasis en Red and AbbVie; advisory board membership for Psoriasis en Red and FFpaciente; organizational grant funding from AbbVie, Leo Pharma, UCB, Celgene, Pfizer, Novartis Oncology, Incyte, Takeda, Bristol-Myers Squibb, The Leukemia & Lymphoma Society and International CML Foundation. JB reports employment for Quality Health Ltd. ZPW reports: employment for Leukemia Care; equity ownership of Patient Evidence; consultancy for Acute Leukemia Advocates Network, Amgen, Bristol-Myers Squibb, Celgene, Incyte, Janssen, Novartis and Pfizer; advisory board membership for Acute Leukemia Advocates Network and CML Advocates Network; speakers bureau for Amgen, Bristol-Myers Squibb, Gilead, Jazz, Novartis and Pfizer; organizational grant funding from AbbVie, Amgen, Bristol-Myers Squibb, Celgene, Daiichi Sankyo, Gilead, Incyte, Jazz, Janssen, Kyowa Kirin, Novartis and Takeda. FB reports: consultancy for Abbvie, Bristol-Myers Squibb, Celgene, Jazz, Novartis, Takeda; board membership of AIL Torino onlus, CML Advocates Network, CLL Advocates Network, MPN Advocates Network; organizational grant funding from Abbvie, Bristol-Myers Squibb, Celgene, Daiichi Sankyo, Gilead, Janssen, Novartis, Pfizer, Roche, Takeda. ROC reports: consultancy for LYLE (patient organization for Lymphoma, Leukemia & MDS), Autisme 4700 DK, Bristol-Myers Squibb, Incyte, Janssen, Novartis Nordic, Roche and Takeda; board membership of LYLE and Autisme 4700 DK; organizational grant funding from Abbvie, Gilead, Incyte, Janssen, Novartis Nordic, Pfizer, Roche and Takeda. BG reports: consultancy for Bristol-Myers Squibb, Incyte, Novartis, Takeda and Pfizer; board membership of AMAL (Association des malades atteints de leucémies); organizational grant funding from Novartis. ND reports Honoraria from Novartis. MD reports no competing interests. JG reports: consultancy for AMGEN, Bristol-Myers Squibb, Bayer, Biomarin, Grünenthal, Janssen, Novartis, Pfizer, Roche, Servier, Takeda and UCB; board membership of CML Advocates Network, Leukemia Patient Advocates Foundation and LeukaNET; contributions to IMI-funded consortium projects HARMONY and EUPATI by EFPIA companies; organizational grant funding from Incyte, Novartis, Pfizer, Bristol-Myers Squibb and Takeda.

Figures

Fig. 1
Fig. 1. Frequency of fear or anxiety during Phase II.
This chart illustrates how patients responded when asked how frequently they experienced fear or anxiety during Phase II.
See this image and copyright information in PMC

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