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  • 1
    In: European Journal of Cancer, Elsevier BV, Vol. 57 ( 2016-04), p. 68-77
    Type of Medium: Online Resource
    ISSN: 0959-8049
    RVK:
    RVK:
    Language: English
    Publisher: Elsevier BV
    Publication Date: 2016
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    detail.hit.zdb_id: 1468190-0
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  • 2
    In: Medical Decision Making, SAGE Publications
    Abstract: While shared decision making (SDM) is advocated for ethical reasons and beneficial outcomes, SDM might also negatively affect patients with incurable cancer. The current study explored whether SDM, and an oncologist training in SDM, are associated with adverse outcomes (i.e., patient anxiety, tension, helplessness/hopelessness, decisional uncertainty, and reduced fighting spirit). Design A secondary analysis of a randomized clinical trial investigating the effects of SDM interventions in the context of advanced cancer. The relations between observed SDM (OPTION12), specific SDM elements (4SDM), oncologist SDM training, and adverse outcomes were analyzed. We modeled adverse outcomes as a multivariate phenomenon, followed by univariate regressions if significant. Results In total, 194 patients consulted by 31 oncologists were included. In a multivariate analysis, observed SDM and adverse outcomes were significantly related. More specifically, more observed SDM in the consultation was related to patients reporting more tension ( P = 0.002) and more decisional uncertainty ( P = 0.004) at 1 wk after the consultation. The SDM element “informing about the options” was especially found to be related to adverse outcomes, specifically to more helplessness/hopelessness ( P = 0.002) and more tension ( P = 0.016) at 1 wk after the consultation. Whether the patient consulted an oncologist who had received SDM training or not was not significantly related to adverse outcomes. No relations with long-term adverse outcomes were found. Conclusions It is important for oncologists to realize that for some patients, SDM may temporarily be associated with negative emotions. Further research is needed to untangle which, when, and how adverse outcomes might occur and whether and how burden may be minimized for patients. Highlights Observed shared decision making was related to more tension and uncertainty postconsultation in advanced cancer patients However, training oncologists in SDM did not affect adverse outcomes. Further research is needed to untangle which, when, and how adverse outcomes might occur and how burden may be minimized
    Type of Medium: Online Resource
    ISSN: 0272-989X , 1552-681X
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2023
    detail.hit.zdb_id: 2040405-0
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  • 3
    In: The Oncologist, Oxford University Press (OUP), Vol. 28, No. 8 ( 2023-08-03), p. e653-e668
    Abstract: Discordance between physicians’ and patients’ prognostic perceptions in advanced cancer care threatens informed medical decision-making and end-of-life preparation, yet this phenomenon is poorly understood. We sought to: (1) describe the extent and direction of prognostic discordance, patients’ prognostic information preferences in cases of prognostic discordance, and physicians’ awareness of prognostic discordance; and (2) examine which patient, physician, and caregiver factors predict prognostic discordance. Materials and Methods Oncologists and advanced cancer patients (median survival ≤12 months; n = 515) from 7 Dutch hospitals completed structured surveys in a cross-sectional study. Prognostic discordance was operationalized by comparing physicians’ and patients’ perceptions of the likelihood of cure, 2-year mortality risk, and 1-year mortality risk. Results Prognostic discordance occurred in 20% (likelihood of cure), 24%, and 35% (2-year and 1-year mortality risk) of physician-patient dyads, most often involving patients with more optimistic perceptions than their physician. Among patients demonstrating prognostic discordance, the proportion who preferred not knowing prognosis varied from 7% (likelihood of cure) to 37% (1-year mortality risk), and 45% (2-year mortality risk). Agreement between physician-perceived and observed prognostic discordance or concordance was poor (kappa = 0.186). Prognostic discordance was associated with several patient factors (stronger fighting spirit, self-reported absence of prognostic discussions, an information source other than the healthcare provider), and greater physician-reported uncertainty about prognosis. Conclusion Up to one-third of the patients perceive prognosis discordantly from their physician, among whom a substantial proportion prefers not knowing prognosis. Most physicians lack awareness of prognostic discordance, raising the need to explore patients’ prognostic information preferences and perceptions, and to tailor prognostic communication.
    Type of Medium: Online Resource
    ISSN: 1083-7159 , 1549-490X
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2023
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  • 4
    In: BMC Cancer, Springer Science and Business Media LLC, Vol. 22, No. 1 ( 2022-09-01)
    Abstract: For some patients with advanced cancer not knowing prognosis is essential. Yet, in an era of informed decision-making, the potential protective function of unawareness is easily overlooked. We aimed to investigate 1) the proportion of advanced cancer patients preferring not to know prognosis; 2) the reasons underlying patients’ prognostic information preference; 3) the characteristics associated with patients’ prognostic information preference; and 4) the concordance between physicians’ perceived and patients’ actual prognostic information preference. Methods This is a cross-sectional study with structured surveys (PROSPECT). Medical and thoracic oncologists included patients ( n  = 524), from seven Dutch hospitals, with metastatic/inoperable cancer and an expected median overall survival of ≤ 12 months. For analysis, descriptive statistics and logistic regression models were used. Results Twenty-five to 31% of patients preferred not to know a general life expectancy estimate or the 5/2/1-year mortality risk. Compared to patients preferring to know prognosis, patients preferring unawareness more often reported optimism, avoidance and inability to comprehend information as reasons for wanting limited information; and less often reported expectations of others, anxiety, autonomy and a sense of control as reasons for wanting complete information. Females ( p   〈  .05), patients receiving a further line of systemic treatment ( p   〈  .01) and patients with strong fighting spirit ( p   〈  .001) were more likely to prefer not to know prognosis. Concordance between physicians’ perceived and patients’ actual prognostic information preference was poor (kappa = 0.07). Conclusions We encourage physicians to explore patients’ prognostic information preferences and the underlying reasons explicitly, enabling individually tailored communication. Future studies may investigate changes in patients’ prognostic information preferences over time and examine the impact of prognostic disclosure on patients who prefer unawareness.
    Type of Medium: Online Resource
    ISSN: 1471-2407
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2022
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  • 5
    In: Annals of Surgery, Ovid Technologies (Wolters Kluwer Health), Vol. 270, No. 1 ( 2019-07), p. 158-164
    Type of Medium: Online Resource
    ISSN: 0003-4932 , 1528-1140
    RVK:
    Language: English
    Publisher: Ovid Technologies (Wolters Kluwer Health)
    Publication Date: 2019
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  • 6
    In: Journal of Advanced Nursing, Wiley, Vol. 77, No. 1 ( 2021-01), p. 296-307
    Abstract: 研究医院护士对延长生命治疗共同决策的实际贡献和潜在贡献的认识,以及对此类贡献前提条件的认识。 设计 定性访谈研究。 方法 对18名医院护士进行半结构化的面对面访谈,这些护士均参与了患有命危疾病患者的护理工作。收集2018年10月至2019年1月之间的数据。两名研究员对访谈内容进行录制、逐字转录和主题分析。 结果 护士对延长生命治疗决策有着不同程度的影响作用。此外,我们确定了护士在治疗过程中可以参与治疗决策的不同接触点。护士对可能促进共同决策行为的可描述为以下三个角色:检查决策质量、对共同决策进行补充和促进共同决策。履行本研究中确定角色作用的先决条件是:(a)护士之间以及护士和其他保健专业人员之间的信息传递;(b)对护士参与决策持积极态度的文化;(c)与医生的良好关系;(d)知识和技能;(e)充裕的时间;以及(f)与患者的良好关系。 结论 护士会说明能反映对患者延长生命治疗共同决策中起到支持作用的行为,尽管并非所有护士都会经历此类参与过程。护士可以通过检查决策质量、补充和促进共同决策来增强在共同决策过程中的作用。 影响 护士在共同决策过程中的作用越来越大。为促进他们的贡献,未来的研究应侧重于护士参与治疗决策的影响可能性,以及循证培训,以提高他们对于其如何发挥这一作用的认识并提供相关指导。
    Type of Medium: Online Resource
    ISSN: 0309-2402 , 1365-2648
    URL: Issue
    Language: English
    Publisher: Wiley
    Publication Date: 2021
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  • 7
    In: Journal of Medical Internet Research, JMIR Publications Inc., Vol. 23, No. 8 ( 2021-8-27), p. e27824-
    Abstract: Due to the increasing use of shared decision-making, patients with esophagogastric cancer play an increasingly important role in the decision-making process. To be able to make well-informed decisions, patients need to be adequately informed about treatment options and their outcomes, namely survival, side effects or complications, and health-related quality of life. Web-based tools and training programs can aid physicians in this complex task. However, to date, none of these instruments are available for use in informing patients with esophagogastric cancer about treatment outcomes. Objective This study aims to develop and evaluate the feasibility of using a web-based prediction tool and supporting communication skills training to improve how physicians inform patients with esophagogastric cancer about treatment outcomes. By improving the provision of treatment outcome information, we aim to stimulate the use of information that is evidence-based, precise, and personalized to patient and tumor characteristics and is communicated in a way that is tailored to individual information needs. Methods We designed a web-based, physician-assisted prediction tool—Source—to be used during consultations by using an iterative, user-centered approach. The accompanying communication skills training was developed based on specific learning objectives, literature, and expert opinions. The Source tool was tested in several rounds—a face-to-face focus group with 6 patients and survivors, semistructured interviews with 5 patients, think-aloud sessions with 3 medical oncologists, and interviews with 6 field experts. In a final pilot study, the Source tool and training were tested as a combined intervention by 5 medical oncology fellows and 3 esophagogastric outpatients. Results The Source tool contains personalized prediction models and data from meta-analyses regarding survival, treatment side effects and complications, and health-related quality of life. The treatment outcomes were visualized in a patient-friendly manner by using pictographs and bar and line graphs. The communication skills training consisted of blended learning for clinicians comprising e-learning and 2 face-to-face sessions. Adjustments to improve both training and the Source tool were made according to feedback from all testing rounds. Conclusions The Source tool and training could play an important role in informing patients with esophagogastric cancer about treatment outcomes in an evidence-based, precise, personalized, and tailored manner. The preliminary evaluation results are promising and provide valuable input for the further development and testing of both elements. However, the remaining uncertainty about treatment outcomes in patients and established habits in doctors, in addition to the varying trust in the prediction models, might influence the effectiveness of the tool and training in daily practice. We are currently conducting a multicenter clinical trial to investigate the impact that the combined tool and training have on the provision of information in the context of treatment decision-making.
    Type of Medium: Online Resource
    ISSN: 1438-8871
    Language: English
    Publisher: JMIR Publications Inc.
    Publication Date: 2021
    detail.hit.zdb_id: 2028830-X
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  • 8
    Online Resource
    Online Resource
    Springer Science and Business Media LLC ; 2020
    In:  Current Treatment Options in Oncology Vol. 21, No. 5 ( 2020-05)
    In: Current Treatment Options in Oncology, Springer Science and Business Media LLC, Vol. 21, No. 5 ( 2020-05)
    Abstract: While prognostic information is considered important for treatment decision-making, physicians struggle to communicate prognosis to advanced cancer patients. This systematic review aimed to offer up-to-date, evidence-based guidance on prognostic communication in palliative oncology. Methods PubMed and PsycInfo were searched until September 2019 for literature on the association between prognostic disclosure (strategies) and patient outcomes in palliative cancer care, and its moderators. Methodological quality was reported. Results Eighteen studies were included. Concerning prognostic disclosure, results revealed a positive association with patients’ prognostic awareness. Findings showed no or positive associations between prognostic disclosure and the physician-patient relationship or the discussion of care preferences. Evidence for an association with the documentation of care preferences or physical outcomes was lacking. Findings on the emotional consequences of prognostic disclosure were multifaceted. Concerning disclosure strategies, affective communication seemingly reduced patients' physiological arousal and improved perceived physician’s support. Affective and explicit communication showed no or beneficial effects on patients’ psychological well-being and satisfaction. Communicating multiple survival scenarios improved prognostic understanding. Physicians displaying expertise, positivity and collaboration fostered hope. Evidence on demographic, clinical and personality factors moderating the effect of prognostic communication was weak. Conclusion If preferred by patients, physicians could disclose prognosis using sensible strategies. The combination of explicit and affective communication, multiple survival scenarios and expert, positive, collaborative behaviour likely benefits most patients. Still, more evidence is needed, and tailoring communication to individual patients is warranted. Implications Future research should examine the effect of prognostic communication on psychological well-being over time and treatment decision-making, and focus on individualising care.
    Type of Medium: Online Resource
    ISSN: 1527-2729 , 1534-6277
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2020
    detail.hit.zdb_id: 2090563-4
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  • 9
    In: Scandinavian Journal of Primary Health Care, Informa UK Limited, Vol. 36, No. 4 ( 2018-10-02), p. 437-445
    Type of Medium: Online Resource
    ISSN: 0281-3432 , 1502-7724
    Language: English
    Publisher: Informa UK Limited
    Publication Date: 2018
    detail.hit.zdb_id: 2027113-X
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  • 10
    Online Resource
    Online Resource
    American Medical Association (AMA) ; 2015
    In:  JAMA Oncology Vol. 1, No. 8 ( 2015-11-01), p. 1169-
    In: JAMA Oncology, American Medical Association (AMA), Vol. 1, No. 8 ( 2015-11-01), p. 1169-
    Type of Medium: Online Resource
    ISSN: 2374-2437
    Language: English
    Publisher: American Medical Association (AMA)
    Publication Date: 2015
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