Background With the global rise in chronic health conditions, health care is transforming, and patient empowerment is being emphasized to improve treatment outcomes and reduce health care costs. Patient-centered innovations are needed. We focused on patients with chronic myeloid leukemia (CML), a chronic disease with a generally good long-term prognosis because of the advent of tyrosine kinase inhibitors. However, both medication adherence by patients and guideline adherence by physicians are suboptimal, unnecessarily jeopardizing treatment outcomes. Objective The aim of this study was to develop a patient-centered innovation for patients with CML using a design thinking methodology. Methods The 5 phases of design thinking (ie, empathize, define, ideate, prototype, and test) were completed, and each phase started with the patient. Stakeholders and end users were identified and interviewed, and observations in the care system were made. Using tools in human-centered design, problems were defined and various prototypes of solutions were generated. These were evaluated by patients and stakeholders and then further refined. Results The patients desired (1) insights into their own disease; (2) insights into the symptoms experienced, both in terms of knowledge and comprehension; and (3) improvements in the organization of care delivery. A web-based platform, CMyLife, was developed and pilot-tested. It has multiple features, all targeting parts of the bigger solution, including a website with reliable information and a forum, a guideline app, personal medical records with logs of symptoms and laboratory results (including a molecular marker and linked to the guideline app), tailored feedback based on the patients’ symptoms and/or results, screen-to-screen consulting, delivery of medication, and the collection of blood samples at home. Conclusions The multifeatured innovation, CMyLife, was developed in a multidisciplinary way and with active patient participation. The aim of developing CMyLife was to give patients the tools to monitor their results, interpret these results, and act on them. With this tool, they are provided with the know-how to consider their results in relation to their personal care process. Whether CMyLife achieves its goal and the evaluation of the added value will be the focus of future studies. CML could become the first malignancy for which patients are able to monitor and manage their disease by themselves.
Purpose of reviewThis review describes the gaps in cancer patient information and comprehension and provides examples of interventions aimed at filling the gaps. Recent findingsDespite the technologically advanced era, unmet information needs remain a challenge in current cancer care, even though the beneficial effects of adequate information provision are well described.It starts with the basics of patient-physician communication and information exchange. Barriers are described both patient and physician-specific. For patients to comprehend and recall information correctly, information provision should be tailored to the specific patient in content, as well as in readability level. Tailored content based on bidirectional and iterative information exchange (i.e., patients reported outcomes, followed by specific/ personalized feedback) is of focus in the current development of interventions aimed at meeting the gaps. However, the effects of such interventions are not overwhelming and the explanation could be multifactorial. SummaryUnmet informational needs are still a gap in current cancer care. The effect of eHealth interventions is not yet well established. Key is to educate patients and (future) healthcare professionals in eHealth. Future research should focus on identifying what kind of interventions are able to fill the gaps.
Studies on the conditional life expectancy of patients with chronic myeloid leukaemia (CML) are lacking. Using data from the Netherlands Cancer Registry, we examined the life expectancy of patients with CML in the Netherlands diagnosed during 1989-2018. As of the early 2010s, the life expectancy of patients with CML who survived several years after diagnosis came narrowly close to the general population's life expectancy, regardless of age. This finding can essentially be ascribed to the introduction and broader application of tyrosine kinase inhibitors (TKIs) and provide optimism to patients with CML who can look forward to a near-normal life expectancy in a modern TKI era.
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