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  1. Article ; Online: Filling the gaps of patient information and comprehension.

    Ector, Geneviève I C G / Hermens, Rosella P M G / Blijlevens, Nicole M A

    Current opinion in oncology

    2020  Volume 32, Issue 4, Page(s) 262–268

    Abstract: Purpose of review: This review describes the gaps in cancer patient information and comprehension and provides examples of interventions aimed at filling the gaps.: Recent findings: Despite the technologically advanced era, unmet information needs ... ...

    Abstract Purpose of review: This review describes the gaps in cancer patient information and comprehension and provides examples of interventions aimed at filling the gaps.
    Recent findings: Despite 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.
    Summary: Unmet 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.
    MeSH term(s) Consumer Health Information ; Health Knowledge, Attitudes, Practice ; Health Literacy ; Humans ; Information Seeking Behavior ; Neoplasms ; Patient Education as Topic
    Language English
    Publishing date 2020-08-19
    Publishing country United States
    Document type Journal Article ; Review
    ZDB-ID 1049384-0
    ISSN 1531-703X ; 1040-8746
    ISSN (online) 1531-703X
    ISSN 1040-8746
    DOI 10.1097/CCO.0000000000000633
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  2. Article ; Online: Adherence to quality indicators in chronic myeloid leukemia care: results from a population-based study in The Netherlands.

    Ector, Geneviève I C G / Geelen, Inge G P / Dinmohamed, Avinash G / Hoogendoorn, Mels / Westerweel, Peter E / Hermens, Rosella P M G / Blijlevens, Nicole M A

    Leukemia & lymphoma

    2022  Volume 64, Issue 2, Page(s) 424–432

    Abstract: Suboptimal guideline adherence in chronic myeloid leukemia (CML) care is associated with worse treatment outcomes. Current study focused on adherence to seven quality indicators (QIs) based on the European Leukemia Network guideline (one diagnostic, one ... ...

    Abstract Suboptimal guideline adherence in chronic myeloid leukemia (CML) care is associated with worse treatment outcomes. Current study focused on adherence to seven quality indicators (QIs) based on the European Leukemia Network guideline (one diagnostic, one therapeutic, and five monitoring indicators). Data were obtained from population-based registries in the Netherlands of 405 newly diagnosed chronic phase CML patients between January 2008 and April 2013. Compliance rates regarding diagnostic and therapeutic indicator were 83% and 78%, respectively. Monitoring indicators rates were lower: 21-27% for indicators concerning the first year and 58% and 62% for the second and third year, respectively. Noncompliance occurred mostly due to non-timely monitoring. Twenty cases did not comply with any indicator, 6% complied with all indicators. After adjustment for age, overall survival rates did not differ significantly between the groups. Adherence to guideline-based QIs was suboptimal. This demonstrates the evidence-practice gap, shows room for improvement and underscores the need for real-world data.
    MeSH term(s) Humans ; Quality Indicators, Health Care ; Netherlands/epidemiology ; Leukemia, Myelogenous, Chronic, BCR-ABL Positive/diagnosis ; Leukemia, Myelogenous, Chronic, BCR-ABL Positive/epidemiology ; Leukemia, Myelogenous, Chronic, BCR-ABL Positive/therapy ; Leukemia, Myeloid, Chronic-Phase/drug therapy ; Treatment Outcome ; Guideline Adherence
    Language English
    Publishing date 2022-11-11
    Publishing country United States
    Document type Journal Article
    ZDB-ID 1042374-6
    ISSN 1029-2403 ; 1042-8194
    ISSN (online) 1029-2403
    ISSN 1042-8194
    DOI 10.1080/10428194.2022.2142055
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  3. Article: A difficult to treat

    Arts, Rob J W / Ector, Geneviève I C G / Bosch-Nicolau, Pau / Molina, Isreal / McCall, Matthew B B / van der Velden, Walter J F M / van Laarhoven, Arjan / de Mast, Quirijn / van Dorp, Suzanne

    IDCases

    2023  Volume 32, Page(s) e01753

    Abstract: Here we describe a complicated case of a ... ...

    Abstract Here we describe a complicated case of a relapsed
    Language English
    Publishing date 2023-03-29
    Publishing country Netherlands
    Document type Case Reports
    ZDB-ID 2745454-X
    ISSN 2214-2509
    ISSN 2214-2509
    DOI 10.1016/j.idcr.2023.e01753
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  4. Article ; Online: Prevalence of COVID-19 diagnosis in Dutch CML patients during the 2020 SARS-CoV2 pandemic. A prospective cohort study.

    Ector, Geneviève I C G / Huijskens, Elisabeth G W / Blijlevens, Nicole M A / Westerweel, Peter E

    Leukemia

    2020  Volume 34, Issue 9, Page(s) 2533–2535

    MeSH term(s) Betacoronavirus ; COVID-19 ; Coronavirus Infections ; Humans ; Leukemia, Myelogenous, Chronic, BCR-ABL Positive ; Pandemics ; Pneumonia, Viral ; Prevalence ; Prospective Studies ; SARS-CoV-2 ; Severe Acute Respiratory Syndrome
    Keywords covid19
    Language English
    Publishing date 2020-07-08
    Publishing country England
    Document type Letter ; Comment
    ZDB-ID 807030-1
    ISSN 1476-5551 ; 0887-6924
    ISSN (online) 1476-5551
    ISSN 0887-6924
    DOI 10.1038/s41375-020-0964-0
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  5. Article ; Online: Effectiveness of digital care platform CMyLife for patients with chronic myeloid leukemia: results of a patient-preference trial.

    Verweij, Lynn / Ector, Geneviève I C G / Smit, Yolba / van Vlijmen, Bas / van der Reijden, Bert A / Hermens, Rosella P M G / Blijlevens, Nicole M A

    BMC health services research

    2023  Volume 23, Issue 1, Page(s) 228

    Abstract: Background: Two most important factors determining treatment success in chronic myeloid leukemia (CML) are adequate medication compliance and molecular monitoring albeit still being suboptimal. The CMyLife platform is an eHealth innovation, co-created ... ...

    Abstract Background: Two most important factors determining treatment success in chronic myeloid leukemia (CML) are adequate medication compliance and molecular monitoring albeit still being suboptimal. The CMyLife platform is an eHealth innovation, co-created with and for CML patients, aiming to improve their care, leading to an increased quality of life and the opportunity of hospital-free care.
    Objective: To explore the effectiveness of CMyLife in terms of information provision, patient empowerment, medication compliance, molecular monitoring, and quality of life.
    Methods: Effectiveness of CMyLife was explored using a patient-preference trial. Upon completion of the baseline questionnaire, participants actively used (intervention group) or did not actively use (questionnaire group) the CMyLife platform for at least 6 months, after which they completed the post-intervention questionnaire. 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. 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. 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: 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.
    Trial registration: ClinicalTrials.gov NCT04595955 , 22/10/2020.
    MeSH term(s) Humans ; Chronic Disease ; COVID-19 ; Leukemia, Myelogenous, Chronic, BCR-ABL Positive/drug therapy ; Pandemics ; Quality of Life
    Language English
    Publishing date 2023-03-08
    Publishing country England
    Document type Clinical Trial ; Journal Article
    ZDB-ID 2050434-2
    ISSN 1472-6963 ; 1472-6963
    ISSN (online) 1472-6963
    ISSN 1472-6963
    DOI 10.1186/s12913-023-09153-9
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  6. Article ; Online: Improvement, Implementation, and Evaluation of the CMyLife Digital Care Platform: Participatory Action Research Approach.

    Verweij, Lynn / Metsemakers, Sanne J J P M / Ector, Geneviève I C G / Rademaker, Peter / Bekker, Charlotte L / van Vlijmen, Bas / van der Reijden, Bert A / Blijlevens, Nicole M A / Hermens, Rosella P M G

    Journal of medical Internet research

    2023  Volume 25, Page(s) e45259

    Abstract: Background: The evaluation of a continuously evolving eHealth tool in terms of improvement and implementation in daily practice is unclear. The CMyLife digital care platform provides patient-centered care by empowering patients with chronic myeloid ... ...

    Abstract Background: The evaluation of a continuously evolving eHealth tool in terms of improvement and implementation in daily practice is unclear. The CMyLife digital care platform provides patient-centered care by empowering patients with chronic myeloid leukemia, with a focus on making medication compliance insightful, discussable, and optimal, and achieving optimal control of the biomarker BCR-ABL1.
    Objective: The aim of this study was to investigate to what extent the participatory action research approach is suitable for the improvement and scientific evaluation of eHealth innovations in daily clinical practice (measured by user experiences) combined with the promotion of patient empowerment.
    Methods: The study used iterative cycles of planning, action, and reflection, whereby participants' experiences (patients, health care providers, the CMyLife team, and app suppliers) with the platform determined next actions. Co-design workshops were the foundation of this cyclic process. Moreover, patients filled in 2 sets of questionnaires for assessing experiences with CMyLife, the actual use of the platform, and the influence of the platform after 3 and at least 6 months. Data collected during the workshops were analyzed using content analysis, which is often used for making a practical guide to action. Descriptive statistics were used to characterize the study population in terms of information related to chronic myeloid leukemia and sociodemographics, and to describe experiences with the CMyLife digital care platform and the actual use of this platform.
    Results: The co-design workshops provided insights that contributed to the improvement, implementation, and evaluation of CMyLife and empowered patients with chronic myeloid leukemia (for example, simplification of language, and improvement of the user friendliness of functionalities). The results of the questionnaires indicated that (1) the platform improved information provision on chronic myeloid leukemia in 67% (33/49) of patients, (2) the use of the medication app improved medication compliance in 42% (16/38) of patients, (3) the use of the guideline app improved guideline adherence in 44% (11/25) of patients, and (4) the use of the platform caused patients to feel more empowered.
    Conclusions: A participatory action research approach is suited to scientifically evaluate digital care platforms in daily clinical practice in terms of improvement, implementation, and patient empowerment. Systematic iterative evaluation of users' needs and wishes is needed to keep care centered on patients and keep the innovation up-to-date and valuable for users.
    MeSH term(s) Humans ; Leukemia, Myelogenous, Chronic, BCR-ABL Positive/drug therapy ; Emotions ; Guideline Adherence ; Health Personnel ; Health Services Research
    Language English
    Publishing date 2023-09-15
    Publishing country Canada
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 2028830-X
    ISSN 1438-8871 ; 1438-8871
    ISSN (online) 1438-8871
    ISSN 1438-8871
    DOI 10.2196/45259
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  7. Article ; Online: Conditional relative survival among adult patients with chronic myeloid leukemia in the tyrosine kinase inhibitor era: a population-based study in the Netherlands.

    Ector, Geneviève I C G / Visser, Otto / Posthuma, Eduardus F M / Westerweel, Peter E / Janssen, Jeroen J W M / Blijlevens, Nicole M A / Dinmohamed, Avinash G

    Leukemia

    2021  Volume 35, Issue 11, Page(s) 3291–3294

    MeSH term(s) Adolescent ; Adult ; Female ; Follow-Up Studies ; Humans ; Leukemia, Myelogenous, Chronic, BCR-ABL Positive/drug therapy ; Leukemia, Myelogenous, Chronic, BCR-ABL Positive/epidemiology ; Leukemia, Myelogenous, Chronic, BCR-ABL Positive/mortality ; Leukemia, Myelogenous, Chronic, BCR-ABL Positive/pathology ; Male ; Middle Aged ; Netherlands/epidemiology ; Prognosis ; Protein Kinase Inhibitors/therapeutic use ; Survival Rate ; Young Adult
    Chemical Substances Protein Kinase Inhibitors
    Language English
    Publishing date 2021-02-18
    Publishing country England
    Document type Journal Article
    ZDB-ID 807030-1
    ISSN 1476-5551 ; 0887-6924
    ISSN (online) 1476-5551
    ISSN 0887-6924
    DOI 10.1038/s41375-021-01174-9
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  8. Article ; Online: Primary therapy and relative survival among elderly patients with chronic myeloid leukemia: a population-based study in the Netherlands, 1989-2017.

    Ector, Geneviève I C G / Visser, Otto / Westerweel, Peter E / Janssen, Jeroen J W M / Blijlevens, Nicole M A / Dinmohamed, Avinash G

    Leukemia

    2020  Volume 34, Issue 12, Page(s) 3408–3412

    Language English
    Publishing date 2020-06-08
    Publishing country England
    Document type Letter
    ZDB-ID 807030-1
    ISSN 1476-5551 ; 0887-6924
    ISSN (online) 1476-5551
    ISSN 0887-6924
    DOI 10.1038/s41375-020-0902-1
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  9. Article ; Online: Correction: Primary therapy and relative survival among elderly patients with chronic myeloid leukemia: a population-based study in the Netherlands, 1989-2017.

    Ector, Geneviève I C G / Visser, Otto / Westerweel, Peter E / Janssen, Jeroen J W M / Blijlevens, Nicole M A / Dinmohamed, Avinash G

    Leukemia

    2020  Volume 34, Issue 12, Page(s) 3440

    Abstract: An amendment to this paper has been published and can be accessed via a link at the top of the paper. ...

    Abstract An amendment to this paper has been published and can be accessed via a link at the top of the paper.
    Language English
    Publishing date 2020-09-28
    Publishing country England
    Document type Published Erratum
    ZDB-ID 807030-1
    ISSN 1476-5551 ; 0887-6924
    ISSN (online) 1476-5551
    ISSN 0887-6924
    DOI 10.1038/s41375-020-01040-0
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  10. Article: Prevalence of COVID-19 diagnosis in Dutch CML patients during the 2020 SARS-CoV2 pandemic. A prospective cohort study

    Ector, Geneviève I C G / Huijskens, Elisabeth G W / Blijlevens, Nicole M A / Westerweel, Peter E

    Leukemia

    Keywords covid19
    Publisher WHO
    Document type Article
    Note WHO #Covidence: #639980
    Database COVID19

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