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 restarting 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.

Treatment-free remission (TFR) after discontinuation of tyrosine kinase inhibitor therapy is now an emerging treatment goal for patients with chronic myeloid leukemia, who have achieved a deep and stable response to treatment. Although guidance is now available, patients' questions regarding this progressive concept have yet to be addressed. The overall aim of this European Steering Group is a patient-centered approach that educates patients on their treatment options, including TFR, facilitates better patient-physician relationships, and meets patients' emotional and psychological needs. The present report outlines 5 key topic areas on discontinuing tyrosine kinase therapy and the implications of TFR for patient-physician consideration: what TFR is; when TFR is appropriate; which patients might and might not be eligible for TFR; and patients' considerations for discontinuing therapy, such as tyrosine kinase withdrawal syndrome, potential psychological implications, molecular recurrence, and repeat treatment. This Steering Group advocates that patients with chronic myeloid leukemia should have access to high-quality, frequent molecular monitoring and be treated in a specialist center with appropriate medical and psychological support. As patient concerns with attempting TFR become forefront in patient-physician discussions, a greater number of eligible patients might be willing to discontinue therapy.

The ongoing COVID‐19 pandemic has presented numerous challenges to the provision of patient care within hematology. We undertook a questionnaire‐based study investigating the experiences and opinions of patients with chronic myeloid leukemia (CML) in the UK in relation to the different models of follow‐up care received during the pandemic. One hundred fifty‐four patients completed the online questionnaire. Only 19% of patients had experienced remote clinics prior to the pandemic compared with 91% afterward. After having experience of remote clinics, the proportion of patients who were positive about the remote clinic concept increased from 34% to 52% (P < .05). However, when asked to compare their experiences with face to face versus remote clinics, 48% preferred face‐to‐face clinics compared with 17% preferring remote clinics (35% expressed no preference). During the pandemic, frequency of blood tests was unchanged for 71% of patients, although they were performed in a number of different locations. The majority of patients (57%) had medication delivered to their home, with a small number (8%) having difficulty obtaining their medication. In terms of future models of care, 72% of patients were in favor of building remote appointments into the clinic model with 61% expressing a preference for a mixture of remote and face‐to‐face appointments. There was also interest in greater utilization of primary care for blood testing. Our findings should help optimize future models of care for CML patients.

Introduction The availability of healthcare apps to support patient self-management of various medical conditions, including cancer, has increased considerably in the past decade. However, there are limited published data on the role of apps in the management of chronic myeloid leukaemia (CML). The primary aim of this study was to investigate the current and future role of apps as a means of supporting patients with CML. Methods A 31-item questionnaire was developed and distributed to patients via three on-line CML support groups. Results Responses were received from 286 patients. There was an approximate 2:1 female: male split and the majority (54%, n = 155) resided in the United Kingdom. 91% (n = 260) of respondents were currently receiving drug treatment for their CML. 23.4% (n = 67) of respondents were aware that apps were available to support their CML management and 11.5% (n = 33) had experience of using such an app. 94.1% (n = 238) of those who had not used a patient support app in the past stated that they would consider using an app in the future to help manage their disease. App awareness was significantly higher amongst male patients (30.3% vs. 19.9%). Likelihood of being a current or previous app user was higher amongst younger patients (16.3% for <55 years old vs. 5.6% for ≥55 years old) whilst younger patients and those with a more recent diagnosis of CML were both more likely to be interested in using an app in the future. When asked about potential app functionality, a drug interaction checker was the feature of greatest interest to respondents. Conclusions We have identified both a lack of awareness of and a low uptake of patient support apps amongst CML patients. Importantly, we have demonstrated a clear interest in CML-specific apps amongst this population. Based on the functionality that study participants were most interested in, we will work with health care professionals, app developers and patients to develop a new app to deliver holistic support to CML patients.

Background In Chronic Myeloid Leukemia (CML), Treatment-free Remission (TFR) refers to having a stable deep molecular response without the need for ongoing Tyrosine Kinase Inhibitor (TKI) treatment. While first recommendations exist about how to manage stopping and re-starting therapy, based on data from the EURO-SKI study, much is still unknown about the experiences of those considering and undertaking TFR. Through this study, we sought to obtain quantitative evidence of patient experience that has previously only been anecdotal and to identify areas of unmet needs. One strong theme to emerge was patients' differing views on the need for psychological support. Method A global online survey was conducted, recruiting patients through CML patient associations, via online forums, social media and other methods. The questionnaire was designed by an expert panel of eight CML patients to capture the experiences of people along all phases of the TFR journey. The different phases were classified as: Phase I - Considerations around stopping treatment; Phase II - Probation period (experiences during the first 6 months of stopping treatment); Phase IIIA -Restarting treatment (experiences where treatment had to restart due to molecular reoccurrence), and Phase IIIB - Long-term remission (experiences of being in long-term, treatment-free remission). Once the question set was agreed, the questionnaire went through two rounds of testing by eight volunteers. This exercise contributed towards refining the questionnaire into a finished version. The questionnaire was translated into eleven languages: Arabic, Danish, English, Finnish, French, German, Hebrew, Italian, Japanese, Russian and Spanish. Fieldwork lasted 20 weeks. Results A total of 1016 responses were collected from CML patients across 68 countries. Patients only answered the sections of the questionnaire that were relevant for them. All 1016 had experience of Phase I, 494 (49%) had experience of Phase II, 159 (16%) had experience of Phase IIIA, and 203 (20%) had experience of IIIB. Of the 494 patients who stopped treatment, 32% said disease reoccurred and 41% reported being in long-term remission (this includes <1% who said, after stopping treatment, they had to restart, but they attempted stopping again and are currently in long-term remission). During Phase I, 22% said they would have liked to have received information on psychological effects. During Phase II: 18% of respondents said they discussed how to deal with psychological aspects with their doctor; 31% of respondents said they felt fear or anxiety before and/or after PCR monitoring tests, and overall 56% of respondents said they felt fear or anxiety and some point during the phase. 45% of males said they felt fear and anxiety during this phase, compared to 63% of females. There were differences in reported psychological and/or emotional support received across Phases II, IIIA and IIIB. Phase II had the smallest proportion of patients who said they received support (20%); in Phase IIIA, this was 26% and in Phase IIIB, 25%. Phase IIIA had the largest proportion of patients who wanted support but didn't receive it (25%); in Phase II, it was 23%, and it was lowest in Phase IIIB, 16%. While the highest proportion of patients answered that psychological/emotional support was not necessary; this varies by gender and across the TFR journey. Phase IIIA had the smallest proportion of patients who said they did not need support (48%); in Phase II this was 57%, and in Phase IIIB it was 59%. Across all phases, a larger proportion of male respondents said support was not necessary, compared to female respondents. Conclusions There are opportunities for more communication and support around psychological issues to be given through the provision of information during the decision-making stage, and/or discussions between doctors and patients during the stopping stage. A considerable proportion of patients feel fear or anxiety at some level during stopping treatment, and not all patients who want psychological and/or emotional support receive it. The psychological well-being of patients should be a consideration of healthcare professionals and addressed at all stages of the TFR journey, to ensure patients receive support at the level they want through personalised care. Figure Disclosures Sharf: Incyte: Honoraria, Other: Advocacy Advisory Board, Research Funding; Abbvie: Other: Advocacy grants funding; Roche: Other: Advocacy grants funding; BMS: Other: Advocacy grants funding, Research Funding; Takeda: Other: Advocacy grants funding; Janssen: Other: Advocacy grants funding; Novartis: Honoraria, Other: Advocacy Advisory Board, Research Funding; Pfizer: Honoraria, Other: Advocacy Advisory Board, Research Funding. Hochhaus:Novartis: Research Funding; BMS: Research Funding; Pfizer: Research Funding; MSD: Research Funding; Incyte: Research Funding. Geissler:Pfizer: Consultancy, Research Funding, Speakers Bureau; Janssen: Consultancy, Speakers Bureau; Novartis: Consultancy, Research Funding, Speakers Bureau; Bristol-Myers Squibb: Consultancy, Research Funding, Speakers Bureau; Biomarin: Consultancy; Takeda: Research Funding; Amgen: Consultancy; Incyte: Research Funding; Roche: Consultancy; Servier: Consultancy; UCB: Consultancy, Speakers Bureau. Marin:Leukemia Patient Advocates Foundation: Employment. Pemberton-Whiteley:Acute Leukemia Advocates Network (ALAN): Consultancy; CML Advocates Network: Membership on an entity's Board of Directors or advisory committees; Patient Evidence: Equity Ownership; Daiichi Sankyo: Other: Grant funding; Gilead: Other: Grant funding, Speakers Bureau; Incyte: Consultancy, Other: Grant funding; Jazz: Other: Grant funding, Speakers Bureau; Janssen: Consultancy, Other: Grant funding; Kyowa Kirin: Other: Grant funding; Novartis: Consultancy, Other: Grant funding, Speakers Bureau; Pfizer: Consultancy, Other: Grant Funding, Speakers Bureau; Takeda: Other: Grant funding; Shire: Other: Grant Funding; AbbVie: Other: Grant funding; Amgen: Consultancy, Other: Grant funding, Speakers Bureau; Bristol-Myers Squibb: Consultancy, Other: Grant funding, Speakers Bureau; Celgene: Consultancy, Other: Grant funding; Leukaemia Care: Employment. Bombaci:CLL Advocate: Consultancy, Membership on an entity's Board of Directors or advisory committees, Other: grant funding ; CML Advocate: Consultancy, Membership on an entity's Board of Directors or advisory committees, Other: Grant funding ; Incyte: Consultancy; Onlus: Consultancy, Membership on an entity's Board of Directors or advisory committees, Other: grant funding; Novartis Pharma AG: Consultancy, Other: Advisory board ; MPN Advocate: Consultancy, Membership on an entity's Board of Directors or advisory committees, Other: grant funding ; Abbive: Consultancy, Other: grading funding; Bristol- Myers: Consultancy, Other: Grant Funding; Jazz: Consultancy, Other: Grant funding ; janssen: Consultancy, Other: grant funding. Christensen:Novartis: Consultancy, Other: Advisory Board; Incyte: Consultancy, Other: Advisory Board. Gouimi:AMAL: Membership on an entity's Board of Directors or advisory committees; Novartis Pharma: Consultancy, Other: Advisory Board; Bristol-Myers: Consultancy; Novartis: Consultancy, Other: funding grant; Takeda: Consultancy; Pfizer: Consultancy. Deekes:Novartis Pharma: Honoraria. Bradley:Quality Health: Employment.