Principal results and comparison with prior work
lung cancer, cancer, CML, breast cancer
BREAST CANCER, CANCER, DISEASE, LUNG CANCER, CML
This is the first patient directed preference trial, including a before-after measurement, to explore the effectiveness of CMyLife on information provision, patient empowerment, medication compliance, molecular monitoring, and quality of life of CML patients. Overall, active use of CMyLife showed a clear trend towards improvement of all above-mentioned components except quality of life. The quality of life questionnaire showed a slight increase in patients’ burden of symptoms but simultaneously a decrease on impact on daily life.Both familiarity with CML related concepts and perceived information provision showed positive trends in patients that actively used CMyLife and information on additional support outside the hospital improved significantly. Especially information provision on direct disease related concepts, such as diagnosis, treatment, tests, and side effects, showed a positive trend towards better information provision, although the percentage of sufficiently informed patients stayed unchanged low in other items. Content of CMyLife should be adjusted according to patients’ information needs to improve information provision. Previous literature emphasized the beneficial effects of adequate information provision in cancer patients [In addition to information provision, CMyLife significantly improved patients’ knowledge on where to find online health information. Literature shows that only half of cancer patients have knowledge and capability to access and differentiate the high amount of web-based information [Patient empowerment was increased in our study, albeit not significant. Patients who are more empowered in taking control of their own disease could believe in their abilities to optimize their medication compliance and oversee their molecular monitoring. Other interactive patient portals, such as one for breast cancer survivors and one for lung cancer patients, showed a decrease in patient activation, although not directly comparable due to a difference in study population, content and features [Our study showed extremely high medication compliance rates. Pre-intervention, these rates were reported as almost 100% and did not significantly change post-intervention. In literature, medication compliance rates vary from 19 to 98%, probably due to heterogeneity in adherence measurement methods and study populations [Our study results show that frequency of hospital visits was not significantly affected by CMyLife. Remarkably, hospital visits decreased in both groups, probably due to the COVID-19 pandemic, during which routine care was deliberately postponed and digital care was stimulated. CMyLife enabled CML patients to continuate their care digitally without any delay or interruption. CMyLife gave patients opportunity to replace in-person visits by video consultations, which decreased the risk of exposing them to COVID-19 [None of the EORTC-QLQ-C30 scales showed significant differences in quality of life between the questionnaire and intervention group. Scores in our study are roughly comparable to cancer patients in general [