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  • 1
    Online Resource
    Online Resource
    Decisional Conflict after Deciding on Potential Participation in Early Phase Clinical Cancer Trials: Dependent on Global Health Status, Satisfaction with Communication, and Timing
    MDPI AG ; 2022
    In:  Cancers Vol. 14, No. 6 ( 2022-03-15), p. 1500-
    Details
    In: Cancers, MDPI AG, Vol. 14, No. 6 ( 2022-03-15), p. 1500-
    Abstract: When standard treatment options are not available anymore, patients with advanced cancer may participate in early phase clinical trials. Improving this complex decision-making process may improve their quality of life. Therefore, this prospective multicenter study with questionnaires untangles several contributing factors to decisional conflict (which reflects the quality of decision-making) in patients with advanced cancer who recently decided upon early phase clinical trial participation (phase I or I/II). We hypothesized that health-related quality of life, health literacy, sense of hope, satisfaction with the consultation, timing of the decision, and the decision explain decisional conflict. Mean decisional conflict in 116 patients was 30.0 (SD = 16.9). Multivariate regression analysis showed that less decisional conflict was reported by patients with better global health status (β = −0.185, p = 0.018), higher satisfaction (β = −0.246, p = 0.002), and who made the decision before (β = −0.543, p 〈 0.001) or within a week after the consultation (β = −0.427, p 〈 0.001). These variables explained 37% of the variance in decisional conflict. Healthcare professionals should realize that patients with lower global health status and who need more time to decide may require additional support. Although altering such patient intrinsic characteristics is difficult, oncologists can impact the satisfaction with the consultation. Future research should verify whether effective patient-centered communication could prevent decisional conflict.
    Type of Medium: Online Resource
    ISSN: 2072-6694
    URL: Article
    DOI: 10.3390/cancers14061500
    Language: English
    Publisher: MDPI AG
    Publication Date: 2022
    detail.hit.zdb_id: 2527080-1
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  • 2
    Online Resource
    Online Resource
    Core values of patients with advanced cancer considering participation in an early-phase clinical trial: a qualitative study
    Springer Science and Business Media LLC ; 2022
    In:  Supportive Care in Cancer Vol. 30, No. 9 ( 2022-09), p. 7605-7613
    Details
    In: Supportive Care in Cancer, Springer Science and Business Media LLC, Vol. 30, No. 9 ( 2022-09), p. 7605-7613
    Abstract: This article identifies the core values that play a role in patients’ decision-making process about participation in early-phase clinical cancer trials. Methods Face-to-face, semi-structured serial interviews ( n  = 22) were performed with thirteen patients with advanced cancer recruited in two Dutch specialized cancer centers. In a cyclic qualitative analysis process, open and axial coding of the interviews finally led to an overview of the values that are woven into patients’ common language about cancer and clinical trials. Results Six core values were described, namely, acceptance creates room for reconsideration of values, reconciliation with one’s fate, hope, autonomy, body preservation, and altruism. Previously found values in advanced cancer, such as acceptance, hope, autonomy, and altruism, were further qualified. Reconciliation with one’s fate and body preservation were highlighted as new insights for early-phase clinical cancer trial literature. Conclusions This article furthers the understanding of core values that play a role in the lives and decision-making of patients with advanced cancer who explore participation in early-phase clinical cancer trials. These values do not necessarily have to be compatible with one another, making tragic choices necessary. Understanding the role of core values can contribute to professional sensitivity regarding what motivates patients’ emotions, thoughts, and decisions and help patients reflect on and give words to their values and preferences. It supports mutual understanding and dialog from which patients can make decisions according to their perspectives on a good life for themselves and their fellows in the context of participation in an early-phase clinical cancer trial.
    Type of Medium: Online Resource
    ISSN: 0941-4355 , 1433-7339
    URL: Article
    DOI: 10.1007/s00520-022-07200-5
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2022
    detail.hit.zdb_id: 1463166-0
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  • 3
    Online Resource
    Online Resource
    Realizing better doctor-patient dialogue about choices in palliative care and early phase clinical trial participation: towards an online value clarification tool (OnVaCT)
    Springer Science and Business Media LLC ; 2019
    In:  BMC Palliative Care Vol. 18, No. 1 ( 2019-12)
    Details
    In: BMC Palliative Care, Springer Science and Business Media LLC, Vol. 18, No. 1 ( 2019-12)
    Abstract: Patients with advanced cancer for whom standard systemic treatment is no longer available may be offered participation in early phase clinical trials. In the decision making process, both medical-technical information and patient values and preferences are important. Since patients report decisional conflict after deciding on participation in these trials, improving the decision making process is essential. We aim to develop and evaluate an Online Value Clarification Tool (OnVaCT) to assist patients in clarifying their values around this end-of-life decision. This improved sharing of values is hypothesized to support medical oncologists in tailoring their information to individual patients’ needs and, consequently, to support patients in taking decisions in line with their values and reduce decisional conflict. Methods In the first part, patients’ values and preferences and medical oncologists’ views hereupon will be explored in interviews and focus groups to build a first prototype OnVaCT using digital communication (serious gaming). Next, we will test feasibility during think aloud sessions, to deliver a ready-to-implement OnVaCT. In the second part, the OnVaCT, with accompanied training module, will be evaluated in a pre-test (12–18 months before implementation) post-test (12–18 months after implementation) study in three major Dutch cancer centres. We will include 276 patients ( 〉  18 years) with advanced cancer for whom standard systemic therapy is no longer available, and who are referred for participation in early phase clinical trials. The first consultation will be recorded to analyse patient-physician communication regarding the discussion of patients’ values and the decision making process. Three weeks afterwards, decisional conflict will be measured. Discussion This project aims to support the discussion of patient values when considering participation in early phase clinical trials. By including patients before their first appointment with the medical oncologist and recording that consultation, we are able to link decisional conflict to the decision making process, e.g. the communication during consultation. The study faces challenges such as timely including patients within the short period between referral and first consultation. Furthermore, with new treatments being developed rapidly, molecular stratification may affect the patient populations included in the pre-test and post-test periods. Trial registration Netherlands Trial Registry number: NTR7551 (prospective; July 17, 2018).
    Type of Medium: Online Resource
    ISSN: 1472-684X
    URL: Article
    DOI: 10.1186/s12904-019-0486-6
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2019
    detail.hit.zdb_id: 2091556-1
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  • 4
    Online Resource
    Online Resource
    Patient values in patient-provider communication about participation in early phase clinical cancer trials: a qualitative analysis before and after implementation of an online value clarification tool intervention
    Springer Science and Business Media LLC ; 2024
    In:  BMC Medical Informatics and Decision Making Vol. 24, No. 1 ( 2024-02-02)
    Details
    In: BMC Medical Informatics and Decision Making, Springer Science and Business Media LLC, Vol. 24, No. 1 ( 2024-02-02)
    Abstract: Patients with advanced cancer who no longer have standard treatment options available may decide to participate in early phase clinical trials (i.e. experimental treatments with uncertain outcomes). Shared decision-making (SDM) models help to understand considerations that influence patients’ decision. Discussion of patient values is essential to SDM, but such communication is often limited in this context and may require new interventions. The OnVaCT intervention, consisting of a preparatory online value clarification tool (OnVaCT) for patients and communication training for oncologists, was previously developed to support SDM. This study aimed to qualitatively explore associations between patient values that are discussed between patients and oncologists during consultations about potential participation in early phase clinical trials before and after implementation of the OnVaCT intervention. Methods This study is part of a prospective multicentre nonrandomized controlled clinical trial and had a between-subjects design: pre-intervention patients received usual care, while post-intervention patients additionally received the OnVaCT. Oncologists participated in the communication training between study phases. Patients’ initial consultation on potential early phase clinical trial participation was recorded and transcribed verbatim. Applying a directed approach, two independent coders analysed the transcripts using an initial codebook based on previous studies. Steps of continuous evaluation and revision were repeated until data saturation was reached. Results Data saturation was reached after 32 patient-oncologist consultations (i.e. 17 pre-intervention and 15 post-intervention). The analysis revealed the values: hope, perseverance, quality or quantity of life, risk tolerance, trust in the healthcare system/professionals, autonomy, social adherence, altruism, corporeality, acceptance of one’s fate, and humanity. Patients in the pre-intervention phase tended to express values briefly and spontaneously. Oncologists acknowledged the importance of patients’ values, but generally only gave ‘contrasting’ examples of why some accept and others refuse to participate in trials. In the post-intervention phase, many oncologists referred to the OnVaCT and/or asked follow-up questions, while patients used longer phrases that combined multiple values, sometimes clearly indicating their weighing. Conclusions While all values were recognized in both study phases, our results have highlighted the different communication patterns around patient values in SDM for potential early phase clinical trial participation before and after implementation of the OnVaCT intervention. This study therefore provides a first (qualitative) indication that the OnVaCT intervention may support patients and oncologists in discussing their values. Trial registration Netherlands Trial Registry: NL7335, registered on July 17, 2018.
    Type of Medium: Online Resource
    ISSN: 1472-6947
    URL: Article
    DOI: 10.1186/s12911-024-02434-1
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2024
    detail.hit.zdb_id: 2046490-3
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  • 5
    Online Resource
    Online Resource
    Discussing prognosis and the end of life with patients with advanced cancer or COPD: A qualitative study
    Public Library of Science (PLoS) ; 2022
    In:  PLOS ONE Vol. 17, No. 9 ( 2022-9-9), p. e0274201-
    Details
    In: PLOS ONE, Public Library of Science (PLoS), Vol. 17, No. 9 ( 2022-9-9), p. e0274201-
    Abstract: To explore patients’ experiences and recommendations for discussions about their prognosis and end of life with their physicians. Methods Patients with advanced cancer or advanced chronic obstructive pulmonary disease (COPD) were enrolled in qualitative interviews, which were analyzed with a phenomenological and thematic approach. Results During interviews with fourteen patients (median age 64 years), we identified the following themes for discussion about prognosis and the end of life: topics discussed, the timing, the setting, physician–patient relationship, responsibilities for clinicians, and recommendations. Patients preferred the physician to initiate such discussion, but wanted to decide about its continuation and content. The discussions were facilitated by an established physician–patient relationship or attendance of relatives. Patients with cancer had had discussions about prognosis at rather clear-cut moments of deterioration than patients with COPD. Patients with COPD did not consider end-of-life discussions a responsibility of the pulmonologist. Patients recommended an understandable message, involvement of relatives or other clinicians, sufficient time, and sensitive non-verbal communication. Conclusions Patients appreciated open, sensitive, and negotiable discussions about prognosis and the end of life. Practice implications Patients’ recommendations could be used for communication training. Possible differences in the need for such discussions between patients with cancer or COPD warrant further research.
    Type of Medium: Online Resource
    ISSN: 1932-6203
    URL: Article
    URL: Article
    URL: Article
    URL: Article
    URL: Article
    URL: Article
    URL: Article
    URL: Article
    URL: Article
    DOI: 10.1371/journal.pone.0274201
    DOI: 10.1371/journal.pone.0274201.g001
    DOI: 10.1371/journal.pone.0274201.t001
    DOI: 10.1371/journal.pone.0274201.t002
    DOI: 10.1371/journal.pone.0274201.s001
    DOI: 10.1371/journal.pone.0274201.r001
    DOI: 10.1371/journal.pone.0274201.r002
    DOI: 10.1371/journal.pone.0274201.r003
    DOI: 10.1371/journal.pone.0274201.r004
    Language: English
    Publisher: Public Library of Science (PLoS)
    Publication Date: 2022
    detail.hit.zdb_id: 2267670-3
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  • 6
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    Impact of COVID-19 on care at the end of life during the first months of the pandemic from the perspective of healthcare professionals from different settings: a qualitative interview study (the CO-LIVE study)
    BMJ ; 2023
    In:  BMJ Open Vol. 13, No. 3 ( 2023-03), p. e063267-
    Details
    In: BMJ Open, BMJ, Vol. 13, No. 3 ( 2023-03), p. e063267-
    Abstract: The objective of this study is to better understand how the COVID-19 outbreak impacted the different domains of the palliative care approach to end-of-life care from the perspective of healthcare professionals (HCPs) from different professions, working in different settings during the first months of the COVID-19 outbreak in the Netherlands. Methods An in-depth qualitative interview study among 16 HCPs of patients who died between March and July 2020 in different healthcare settings in the Netherlands. The HCPs were recruited through an online survey about end-of-life care. Maximum variation sampling was used. Data were analysed following the principles of thematic analysis. Results Several aspects impacted the quality of the palliative care approach to care at the end of life. First, COVID-19 was a new disease and this led to challenges in the physical domain of end-of-life care, for example, a lack of knowledge on how to manage symptoms and an unreliable clinical view. Second, the high workload HCPs experienced impacted the quality of end-of-life care, especially in the emotional, social and spiritual domains, since they only had time for urgent, physical care. Third, COVID-19 is a contagious disease and measures taken to prevent the spread of the virus hampered care for both patients and relatives. For example, because of the visiting restrictions, HCPs were not able to provide emotional support to relatives. Finally, the COVID-19 outbreak also had a potentially positive impact in the longer term, for example, more awareness of advance care planning and the importance of end-of-life care that includes all the domains. Conclusion The palliative care approach, which is key to good end-of-life care, was often negatively influenced by the COVID-19 pandemic, predominantly in the emotional, social and spiritual domains. This was related to a focus on essential physical care and prevention of the spread of COVID-19.
    Type of Medium: Online Resource
    ISSN: 2044-6055 , 2044-6055
    URL: Article
    URL: Article
    URL: Article
    DOI: 10.1136/bmjopen-2022-063267
    DOI: 10.1136/bmjopen-2022-063267.supp1
    DOI: 10.1136/bmjopen-2022-063267.supp2
    Language: English
    Publisher: BMJ
    Publication Date: 2023
    detail.hit.zdb_id: 2599832-8
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  • 7
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    Online Resource
    Grief after Pandemic Loss: Factors Affecting Grief Experiences (the CO-LIVE Study)
    Informa UK Limited ; 2023
    In:  Journal of Loss and Trauma
    Details
    In: Journal of Loss and Trauma, Informa UK Limited
    Type of Medium: Online Resource
    ISSN: 1532-5024 , 1532-5032
    URL: Article
    DOI: 10.1080/15325024.2023.2229137
    Language: English
    Publisher: Informa UK Limited
    Publication Date: 2023
    detail.hit.zdb_id: 2063770-6
    SSG: 5,2
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