Background For cancer patients to effectively engage in decision making, they require comprehensive and understandable information regarding treatment options and their associated outcomes. We... Show moreBackground For cancer patients to effectively engage in decision making, they require comprehensive and understandable information regarding treatment options and their associated outcomes. We developed an online prediction tool and supporting communication skills training to assist healthcare providers (HCPs) in this complex task. This study aims to assess the impact of this combined intervention (prediction tool and training) on the communication practices of HCPs when discussing treatment options. Methods We conducted a multicenter intervention trial using a pragmatic stepped wedge design (NCT04232735). Standardized Patient Assessments (simulated consultations) using cases of esophageal and gastric cancer patients, were performed before and after the combined intervention (March 2020 to July 2022). Audio recordings were analyzed using an observational coding scale, rating all utterances of treatment outcome information on the primary outcome-precision of provided outcome information-and on secondary outcomes-such as: personalization, tailoring and use of visualizations. Pre vs. post measurements were compared in order to assess the effect of the intervention. Findings 31 HCPs of 11 different centers in the Netherlands participated. The tool and training significantly affected the precision of the overall communicated treatment outcome information (p = 0.001, median difference 6.93, IQR (-0.32 to 12.44)). In the curative setting, survival information was significantly more precise after the intervention (p = 0.029). In the palliative setting, information about side effects was more precise (p < 0.001). Interpretation A prediction tool and communication skills training for HCPs improves the precision of treatment information on outcomes in simulated consultations. The next step is to examine the effect of such interventions on communication in clinical practice and on patient-reported outcomes. Funding Financial support for this study was provided entirely by a grant from the Dutch Cancer Society (UVA 2014-7000). Copyright (c) 2023 The Author(s). Published by Elsevier Ltd. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/). Show less
Background and aim: Patient decision aids for oncological treatment options, provide information on the effect on recurrence rates and/or survival benefit, and on side-effects and/or burden of... Show moreBackground and aim: Patient decision aids for oncological treatment options, provide information on the effect on recurrence rates and/or survival benefit, and on side-effects and/or burden of different treatment options. However, often uncertainty exists around the probability estimates for recurrence/survival and side-effects which is too relevant to be ignored. Evidence is lacking on the best way to communicate these uncertainties. The aim of this study is to develop a method to incorporate uncertainties in a patient decision aid for breast cancer patients to support their decision on radiotherapy.Methods: Firstly, qualitative interviews were held with patients and health care professionals. Secondly, in the development phase, thinking aloud sessions were organized with four patients and 12 health care professionals, individual and group-wise.Results: Consensus was reached on a pictograph illustrating the whole range of uncertainty for local recurrence risks, in combination with textual explanation that a more exact personalized risk would be given by their own physician. The pictograph consisted of 100 female icons in a 10 x 10 array. Icons with a stepwise gradient color indicated the uncertainty margin. The prevalence and severity of possible sideeffects were explained using verbal labels.Conclusions: We developed a novel way of visualizing uncertainties in recurrence rates in a patient decision aid. The effect of this way of communicating risk uncertainty is currently being tested in the BRASA study (NCT03375801). (C) 2020 The Author(s). Published by Elsevier Ltd. Show less
This thesis is based on five papers on several topics: Survival analysis (Chapters 1-2); Optimal Scaling transformations in the Cox proportional hazards model (Chapter 3) and Generalized Linear... Show moreThis thesis is based on five papers on several topics: Survival analysis (Chapters 1-2); Optimal Scaling transformations in the Cox proportional hazards model (Chapter 3) and Generalized Linear Models (Chapter 4); and the interpretation of verbal probability phrases (Chapter 5).See the thesis’ English/Dutch summary for more detailed information. Show less
Kunneman, M.; Stiggelbout, A.M.; Pieterse, A.H. 2020
Objective: To assess the numerical probabilities that individuals associate with frequently-used verbal labels relating to treatment outcomes and their association with medical context, age, gender... Show moreObjective: To assess the numerical probabilities that individuals associate with frequently-used verbal labels relating to treatment outcomes and their association with medical context, age, gender, educational level, health literacy, and numeracy.Methods: Verbal labels (N = 11) were extracted from N = 90 audiotaped decision encounters in oncology. Three hundred Dutch adults, as proxies for newly-diagnosed cancer patients, assigned numerical probabilities to the labels in the context of cancer recurrence or nausea, and completed questions on their socio-demographic characteristics, health literacy and numeracy.Results: We found considerable variation in how individuals interpreted the verbal labels. Participants' probability estimates of verbal labels was lower in the context of (the more serious) cancer recurrence compared to (less serious) nausea. Lower numerate participants differentiated less between labels. There was no association between participants' estimates and age, gender, educational level or health literacy.Conclusion: There is considerable variation in how individuals interpret verbal labels frequently-used in decision encounters. Individuals seem to take base rates and severity of outcomes into account. Verbal labels may be less helpful to lower numerate individuals.Practice implications: To minimize misinterpretation and to improve patient-clinician decision making about health and care, we recommend to avoid the use of verbal labels only. (C) 2019 Elsevier B.V. All rights reserved. Show less
The objective of the work presented in this thesis is to assess information provision about adjuvant systemic therapy during consultations between early-stage breast cancer patients and medical... Show moreThe objective of the work presented in this thesis is to assess information provision about adjuvant systemic therapy during consultations between early-stage breast cancer patients and medical oncologists in general. In this era of personalized medicine, prediction tools (e.g., Adjuvant!) are becoming an integral part of information provision during patient consultations. However, evidence is lacking about a) how prevalent the use of such tools is during patient consultations, and b) whether and how the use of such tools influences information provision. Therefore, this thesis in addition to assessing the availability and the quality of prediction tools for the early-stage breast cancer setting, also zooms in on the use of such tools during patient consultations and their impact on the content of consultations. Show less
Kunneman, M.; Stiggelbout, A.M.; Marijnen, C.A.M.; Pieterse, A.H. 2015
Women from families in which many individuals have developed breast and/or ovarian cancer may request for DNA-testing. A DNA-test result may disclose their own risks to develop cancer (again),... Show moreWomen from families in which many individuals have developed breast and/or ovarian cancer may request for DNA-testing. A DNA-test result may disclose their own risks to develop cancer (again), their relatives__ risks and subsequent options for medical surveillance. This thesis describes several multicenter studies in the Netherlands about the psychological and medical impact of DNA-testing on the lives of these women and their relatives. Despite their accurate understanding of the global meaning of DNA-test result, many participants interpreted the result differently from what the genetic-counselor had actually communicated. Like in a children__s whisper game, their relatives also misinterpreted the information communicated by the first messenger. The messengers__ misinterpretation was not only related to their inaccurate thoughts about heredity and cancer in general, but also to their feelings, and especially to their unfulfilled need for certainty, sense of self and unresolved existential issues. The presence of misinterpretations predicted the extent of the counselees' distress and the medical decisions after DNA-test result disclosure. The study results are described in their historical and theoretical context, followed by practical clinical suggestions for genetic-counselors and psychologists. For instance, we suggest that genetic-counselor try to avoid the communication of ambiguous DNA-test results that do not have medical consequences. Show less
After the Bijlmermeer aviation disaster on October 4th 1992, there was growing concern about the health of the residents and rescue workers exposed to the disaster. Persisting rumours about the... Show moreAfter the Bijlmermeer aviation disaster on October 4th 1992, there was growing concern about the health of the residents and rescue workers exposed to the disaster. Persisting rumours about the cause of the crash, toxic exposure and health consequences led more than eight years later to the Medical Investigation Bijlmermeer Aviation Disaster (Dutch acronym: MOVB). The MOVB consisted of an epidemiological investigation to assess the relationship between health complaints and exposure to the disaster and an individual medical examination for all individuals who considered themselves to be suffering from the consequences of the disaster. This thesis describes the results of the effects of participation in both studies. Overall, participation in the MOVB has had a negative effect on residents and rescue workers: after the investigation they became more worried about their health and more sensitive for complaints. Several factors seem important in explaining this adverse effect: whether or not they consulted a physician to discuss the results of the examination, the way in which communication of the results of the epidemiological study took place, the timing of this investigation more than eight years after the aviation disaster, and individual differences and vulnerabilities among the participants. Show less
