An investigation of the use of app technology to support clinical management of patients with chronic myeloid leukaemia (CML).

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.

Models of care for chronic myeloid leukemia patients during the COVID-19 pandemic in the United Kingdom: Changes in patient attitudes to remote consultations and future implications.

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.

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

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.

Considerations for Treatment-free Remission in Patients With Chronic Myeloid Leukemia: A Joint Patient-Physician Perspective.

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.