Popis: |
BACKGROUND The two most important factors determining treatment success in chronic myeloid leukemia (CML) are adequate medication compliance and molecular monitoring, but both are still suboptimal. The CMyLife platform is an eHealth innovation, co-created with and for CML patients. CMyLife aims to provide these patients with tools and knowledge to have more control over their disease process and improve medication compliance and molecular monitoring. This could eventually lead to an increased quality of life and the opportunity of hospital-free care. OBJECTIVE The aim of this study was to explore the effectiveness of CMyLife in terms of information provision, patient empowerment, medication compliance, molecular monitoring, and quality of life. METHODS The effectiveness of CMyLife was explored using a patient-preference trial. Participants received a written baseline questionnaire by mail. Upon completion of the baseline questionnaire, participants actively used (intervention group) or did not actively use (questionnaire group) the CMyLife platform for at least six months, after which they completed the post-intervention questionnaire. The scores between the intervention group and the questionnaire group were compared with regard to the within-subject change between baseline and post-measurement using Generalized Estimating Equation models. RESULTS At baseline, 33 patients were enrolled in the questionnaire group and 75 in the intervention group. After six months, 29 patients filled in the post-intervention questionnaire in the questionnaire group and 57 patients filled in the post-intervention questionnaire in the intervention group. Online health information knowledge improved significantly when actively using CMyLife and patients felt more empowered. No significant improvements were found regarding medication compliance and molecular monitoring, which were already outstanding. However, self-reported effectiveness showed that patients experienced that using CMyLife improved their medication compliance and helped them to oversee their molecular monitoring. Patients using CMyLife reported more symptoms but were better able to manage these. CONCLUSIONS In the future, an iterative process of assessing patients’ needs and further adjustment of CMyLife is required, to keep care patient-centered and put patients in lead of their disease process. Since hospital-free care has shown to be feasible in time of the COVID-19 pandemic, eHealth-based innovations such as CMyLife could be a solution to maintain the quality of care and make current oncological health care services more sustainable. CLINICALTRIAL ClinicalTrials.gov NCT04595955 |