Publications by authors named "Ellen M A Smets"

Purpose/background: Patients diagnosed with cancer at reproductive age can be offered fertility preservation, which includes options of freezing sperm (male patients), oocytes, embryos, or ovarian tissue (female patients). This is intended to provide survivors with a chance to have biological children later in life (e.g.

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Objectives: During conversations with families of critically ill patients in intensive care units (ICUs), clinicians' metaphoric language use may facilitate families' understanding, but also has potential drawbacks. We sought to obtain insights regarding how ICU clinicians use metaphors regarding patients' disease and treatment trajectory.

Methods: We identified clinicians' metaphor use in N=101 audio-recorded neonatal, pediatric, and adult ICU family conversations about life-sustaining treatments.

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Introduction: We explored patients' and families' interest in, predictors of, and considerations regarding genetic testing for monogenic causes of dementia in a diagnostic setting.

Methods: This mixed-methods study evaluated 519 consecutive Alzheimer Center Amsterdam patients for monogenic testing eligibility. Among those qualifying, differences between testers and non-testers were analyzed.

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Objective: Experimental studies using vignettes investigate the impact of healthcare professional or patient/client characteristics, communication, and/or other behaviors on outcomes. To ensure methodological rigor and quality, guidance is needed for systematic reporting of such studies. We describe the development of the Guideline for RepOrting of Vignette Experiments (GROVE).

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Objectives: We disclosed amyloid PET results to people with subjective cognitive decline (SCD) and analysed audiotaped consultations. The aim was to examine the needs expressed by people with SCD and their care partners during amyloid PET disclosure consultations, and to explore neurologists' communication behaviours surrounding these expressions of need.

Methods: 53 persons with SCD (65 ± 7.

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Objective: To study information needs after receiving abnormal amyloid-PET results, and how individual characteristics moderate effects of different communication strategies on information recall.

Methods: In an online video-vignette experiment, seven vignettes each depicted a consultation of a physician sharing abnormal amyloid-PET results with a patient with Mild Cognitive Impairment(MCI), using different communication strategies. Healthy individuals (N = 1017; age 64 ± 8, 808(79 %) female), instructed to imagine themselves as the video-patient, viewed a randomly-assigned vignette and completed questionnaires to assess information needs and test moderation effects of gender, age, care-partner experience, health literacy, and coping.

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Purpose: Tobacco and alcohol use influence cancer risk as well as treatment outcomes, specifically for esophageal and gastric cancer patients. Therefore, it is an important topic to discuss during consultations. This study aims to uncover medical, radiation, and surgical oncologists' communication about substance use, i.

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Digital health can enhance self-management of patients such as usage of medication reminders, thereby improving health outcomes. However, for successful implementation of such interventions, integration with the electronic health record (EHR) is useful. We evaluated the implementation of an integrated patient portal medication reminder tool in kidney transplant patients.

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Introduction: We disclosed amyloid positron emission tomography (PET) results in individuals with subjective cognitive decline (SCD) and studied patient experiences and outcomes over a 6-month period.

Methods: Fifty-seven participants from the Subjective Cognitive Impairment Cohort (SCIENCe) (66 ± 8 years, 21 [37%] F, Mini-Mental State Examination 29 ± 1, 15 [26%] amyloid positive [A+]) completed questionnaires 1 week prior (T0), 1 day after (T1), and 6 months after amyloid PET disclosure (T2). Questionnaires addressed patient-reported experiences and outcomes.

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Objectives: Digital transformation in healthcare is a necessity considering the steady increase in healthcare costs, the growing ageing population and rising number of people living with chronic diseases. The implementation of digital health technologies in patient care is a potential solution to these issues, however, some challenges remain. In order to navigate such complexities, the perceptions of healthcare professionals (HCPs) must be considered.

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Background: Maternity care increasingly aims to achieve Shared Decision-making (SDM), yet seemingly not to the benefit of clients with low health literacy (HL). We developed an SDM training for healthcare professionals (HCPs) and a conversation aid to support HL-sensitive SDM in maternity care.

Methods: The training and conversation aid were based on previous needs assessments and expert consultation, and were developed in co-creation with clients ( = 15) and HCPs ( = 7).

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Objectives: We aimed to investigate effects of prognostic communication strategies on emotions, coping, and appreciation of consultations in advanced cancer.

Methods: For this experimental study, we created 8 videos of a scripted oncological consultation, only varying in prognostic communication strategies. Disease-naive individuals ( = 1036) completed surveys before and after watching 1 video, while imagining being the depicted cancer patient.

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Context: Evidence-based guidance for oncologists on how to communicate prognosis is scarce.

Objectives: To investigate the effects of prognostic communication strategies (prognostic disclosure vs. communication of unpredictability vs.

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Introduction: We aimed to evaluate informal caregivers' attitudes toward undergoing and future implementation of blood-based biomarkers (BBBM) testing for Alzheimer's disease (AD).

Methods: We explored caregivers' perspectives, by combining an online survey ( = 107) with a subsequent focus group ( = 7). We used descriptive statistics and thematic content analysis to identify common themes in answers to open-ended survey questions and focus group data.

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Although medical information is essential for all patients, information needs and information processing capacities vary between individual patients and over time and context, within patients. Therefore, it is often recommended to "tailor" medical information to individual patients during clinic visits. However, there is a lack of consensus on what "tailoring" in clinical interactions represents since the definitions provided in the literature thus far generally regard tailoring of written text, rather than in dialogue during face-to-face interactions.

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Article Synopsis
  • The study investigated the potential negative impact of shared decision making (SDM) on patients with incurable cancer, focusing on outcomes like anxiety and hopelessness.
  • Analyzing data from 194 patients and 31 oncologists, the research found that increased SDM in consultations was linked to higher levels of tension and decisional uncertainty.
  • The specific SDM element of informing patients about their options was notably associated with feelings of helplessness and tension, indicating the need for oncologists to be cautious about how they implement SDM, despite no long-term adverse effects being observed.
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Purpose: To examine the effects of training general practitioners and nurses in shared decision-making (SDM) support as perceived by cancer patients and survivors.

Design: An innovative, experimental design was adopted that included analogue patients (APs), that is, people who have or have had cancer and who imagine themselves in the position of the actor-patient presented in a video. Each AP assessed a video-recorded simulated consultation of a health care professional (HCP) conducted before or after an SDM support training program.

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Background: Shared decision-making (SDM) in maternity care is challenging when clients have insufficient health literacy (HL) skills. This study gained insight in how professionals apply HL-sensitive SDM in Dutch maternity care and their needs for support therein.

Methods: Maternity care professionals (n = 30) completed a survey on SDM and the role of HL.

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Background And Objectives: To provide support to parents of critically ill children, it is important that physicians adequately respond to parents' emotions. In this study, we investigated emotions expressed by parents, physicians' responses to these expressions, and parents' emotions after the physicians' responses in conversations in which crucial decisions regarding the child's life-sustaining treatment had to be made.

Methods: Forty-nine audio-recorded conversations between parents of 12 critically ill children and physicians working in the neonatal and pediatric intensive care units of 3 Dutch university medical centers were coded and analyzed by using a qualitative inductive approach.

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Background: The paradigm shift towards earlier Alzheimer's disease (AD) stages and personalized medicine creates new challenges for clinician-patient communication. We conducted a survey among European memory clinic professionals to identify opinions on communication about (etiological) diagnosis, prognosis, and prevention, and inventory needs for augmenting communication skills.

Methods: Memory clinic professionals (N = 160) from 21 European countries completed our online survey (59% female, 14 ± 10 years' experience, 73% working in an academic hospital).

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The patient-physician relationship is a critical determinant of patient health outcomes. Verbal and non-verbal communication, such as eye gaze, are vital aspects of this bond. Neurobiological studies indicate that oxytocin may serve as a link between increased eye gaze and social bonding.

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Unlabelled: The key to stopping Alzheimer's disease (AD) lies in the pre-dementia stages, with the goal to stop AD before dementia has started. We present the rationale and design of the ABOARD (A Personalized Medicine Approach for Alzheimer's Disease) project, which aims to invest in personalized medicine for AD. ABOARD is a Dutch public-private partnership of 32 partners, connecting stakeholders from a scientific, clinical, and societal perspective.

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Alzheimer's disease (AD) is a major healthcare challenge with no curative treatment at present. To address this challenge, we need a paradigm shift, where we focus on pre-dementia stages of AD. In this Perspective, we outline a strategy to move towards a future with personalized medicine for AD by preparing for and investing in effective and patient-orchestrated diagnosis, prediction and prevention of the dementia stage.

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Article Synopsis
  • Up to one-third of advanced cancer patients have a different perception of their prognosis compared to their physicians, often showing more optimism about their likelihood of cure and survival.
  • Many patients prefer not knowing their prognosis when there is discordance, with preferences varying based on the type of prognosis discussed (ranging from 7% to 45%).
  • Physicians generally do not recognize this discordance, which highlights the importance of improving communication and awareness in end-of-life discussions to facilitate better decision-making and preparation for patients.
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