Impact of hospital experience on the quality of tyrosine kinase inhibitor response monitoring and consequence for chronic myeloid leukemia patient survival

Geelen, Inge G.P.; Thielen, Noortje; Janssen, Jeroen; Hoogendoorn, Mels; Roosma, Tanja J.A.; Willemsen, Sten P.; Valk, Peter J.M.; Visser, Otto; Cornelissen, Jan J.; Westerweel, Peter E.

doi:10.3324/haematol.2017.175265

Cited by 10 publications

(6 citation statements)

References 12 publications

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“…Furthermore, by transferring the majority of care outside of the hospital, CML care is centralized digitally. This could be beneficial as adherence to guidelines was found to be the lowest in small centers treating just one or a few newly diagnosed patients with CML [ 42 ]. Even for patients who have achieved TFR and discontinued TKI treatment, CMyLife could be of added value.…”

Section: Discussionmentioning

confidence: 99%

The Development of a Web-Based, Patient-Centered Intervention for Patients With Chronic Myeloid Leukemia (CMyLife): Design Thinking Development Approach

Ector¹,

Westerweel²,

Hermens³

et al. 2020

J Med Internet Res

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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.

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Section: Discussionmentioning

confidence: 99%

The Development of a Web-Based, Patient-Centered Intervention for Patients With Chronic Myeloid Leukemia (CMyLife): Design Thinking Development Approach

Ector¹,

Westerweel²,

Hermens³

et al. 2020

J Med Internet Res

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show abstract

“…On the other hand, patients treated in routine practice suffer from many challenges. Even within developed countries, treatment in academic centers has been associated with better survival [18]. The 5-year relative survival in patients with CML was lower than the general population and was lower in Germany than in the US (68% in Germany and 72% in the US) [10,11].…”

Section: Discussionmentioning

confidence: 99%

Chronic Myeloid Leukemia: Long-Term Outcome Data in the Imatinib Era

Ganesan

Radhakrishnan

et al. 2018

Indian J Hematol Blood Transfus

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Recent reports suggest that in the TKI era, the survival of chronic myeloid leukemia approaches that of general population. The real-world situation may be different. We analyzed patients (C 18 years) with chronic phase (CP) CML enrolled over a 7-year period (2002-2008) in an imatinib access program. Event was defined as non-achievement/loss of complete hematological response (CHR), loss of cytogenetic response or progression to accelerated (AP)/blast phase (BC). Progression was defined as development of AP/BC. Any delay of C 1 week in reporting for drug refills was categorized as non-adherence. Of the 443 patients with CP-CML who started imatinib [median age: 36 years (18-70); High risk: 32% (Sokal) and 14% (Hasford/EUTOS)], 162 (37%) had received prior therapy [mostly hydroxyurea (N = 153]. CHR was achieved by 430 (97%). After a median follow up of 109.5 months (3.4-184.3), the EFS, PFS and OS at 10 years was 43%, 75% and 76% respectively. Superior EFS was predicted by low-risk Hasford score and adherence to therapy. Adherence to therapy was the only factor which predicted EFS on multivariate analysis (HR 0.64, 95% CI 0.50-0.83, P = 0.001). Long-term follow up of patients with CP-CML reflects poorer survival than those reported from clinical trials and reflects multiple issues that affect ''real-world'' patients. The continued drop in EFS, noted during long-term follow up, might take time to impact the PFS and OS due to the chronic nature of the disease. Sustained adherence to therapy is important for optimum long-term outcomes.

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“…The Dutch health care system involves mandatory health care insurance, covering all CML care which makes treatment accessible to all patients. Since CML is a rare disease treatment results differ between hospitals with high and low CML patient numbers receiving treatment [ 34 ].…”

Section: Methodsmentioning

confidence: 99%

A comprehensive eHealth implementation guide constructed on a qualitative case study on barriers and facilitators of the digital care platform CMyLife

Verweij¹,

Smit²,

Blijlevens³

et al. 2022

BMC Health Serv Res

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Background Substantial proliferation of eHealth has enabled a move in patient-centred cancer care from the traditional in-person care model to real-time, dynamic, and technology supported on-demand care. However, in general, the uptake of these innovations is low. Studies show that eHealth is helpful in providing patient empowerment through e.g. providing high quality and timely information, enabling self-monitoring and shared decision making, but dropout rates are high and guidance for optimal implementation is lacking. Aim To explore barriers to and facilitators for nationwide implementation and consolidation of CMyLife, a multi-component, patient-centred, digital care platform, and to construct a comprehensive implementation guide for launching digital care platforms in daily clinical practice. Methods The first qualitative case study of a digital care platform like CMyLife was performed including five focus group- and eighteen in-depth interviews with stakeholders. Data were collected using a semi-structured interview guide, based on the frameworks of Grol and Flottorp. Transcripts of the interviews were analysed and barriers and facilitators were identified and categorized according to the frameworks. An iterative process including participation of main stakeholders and using the CFIR-ERIC framework led to creating a comprehensive implementation guide for digital care platforms. Results In total, 45 barriers and 41 facilitators were identified. Main barriers were lack of connectivity between information technology systems, changing role for both health care providers and patients, insufficient time and resources, doubts about privacy and security of data, and insufficient digital skills of users. Main facilitators mentioned were motivating patients and health care providers by clarifying the added value of use of a digital care platform, clear business case with vision, demonstrating (cost) effectiveness, using an implementation guide, and educating patients and health care providers about how to use CMyLife. Based on these barriers and facilitators a clear and comprehensive implementation guide was developed for digital care platforms. Conclusion Several barriers to and facilitators for implementation were identified, a clear overview was presented, and a unique comprehensive implementation guide was developed for launching future digital care platforms in daily clinical practice. The next step is to validate the implementation guide in other (oncological) diseases.

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Impact of hospital experience on the quality of tyrosine kinase inhibitor response monitoring and consequence for chronic myeloid leukemia patient survival

Cited by 10 publications

References 12 publications

The Development of a Web-Based, Patient-Centered Intervention for Patients With Chronic Myeloid Leukemia (CMyLife): Design Thinking Development Approach

The Development of a Web-Based, Patient-Centered Intervention for Patients With Chronic Myeloid Leukemia (CMyLife): Design Thinking Development Approach

Chronic Myeloid Leukemia: Long-Term Outcome Data in the Imatinib Era

A comprehensive eHealth implementation guide constructed on a qualitative case study on barriers and facilitators of the digital care platform CMyLife

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