Objective: We investigated motivations of patients and care partners for their memory clinic visit, and whether these are expressed in consultations.Methods: We included data from 115 patients (age... Show moreObjective: We investigated motivations of patients and care partners for their memory clinic visit, and whether these are expressed in consultations.Methods: We included data from 115 patients (age 71 +/- 11, 49% Female) and their care partners (N = 93), who completed questionnaires after their first consultation with a clinician. Audio-recordings of these consultations were available from 105 patients. Motivations for visiting the clinic were content-coded as reported by patients in the questionnaire, and expressed by patients and care partners in consultations.Results: Most patients reported seeking a cause for symptoms (61%) or to confirm/exclude a (dementia) diagnosis (16%), yet 19% reported another motivation: (more) information, care access, or treatment/advice. In the first consultation, about half of patients (52%) and care partners (62%) did not express their motivation(s). When both expressed a motivation, these differed in about half of dyads. A quarter of patients (23%) expressed a different/complementary motivation in the consultation, then reported in the questionnaire.Conclusion: Motivations for visiting a memory clinic can be specific and multifaceted, yet are often not addressed during consultations. Practice implications: We should encourage clinicians, patients, and care partners to talk about motivations for visiting the memory clinic, as a starting point to personalize (diagnostic) care. Show less
The Video Engagement Scale (VES) is a quality indicator to assess engagement in experimental video-vignette studies, but its measurement properties warrant improvement. Data from previous studies... Show moreThe Video Engagement Scale (VES) is a quality indicator to assess engagement in experimental video-vignette studies, but its measurement properties warrant improvement. Data from previous studies were combined (N = 2676) and split into three subsamples for a stepped analytical approach. We tested construct validity, criterion validity, reliability, and measurement invariance. Confirmatory factor analysis (CFA) reiterated poor fit of the previously suggested subscales. An alternative 2-factor structure is presented, which was cross-validated and further shortened (VES-sf). Reliability of both subscales (Immersion, Emotional Impact) was very high (alpha > .86). Multi-group CFAs demonstrated partial and complete measurement invariance among male/female and differently educated participants respectively. Invariance between healthy versus ill participants was not established, but CFAs supported the VES-sf structure in both groups separately. To conclude, we provide the VES-sf with sound measurement properties and demonstrated the appropriateness of comparing certain subgroups. Overall, we recommend the VES-sf to assess engagement/ecological validity in video-vignette research. Show less
Uncertainty is increasingly discussed during genetic counseling due to innovative techniques, e.g., multigene panel testing. Discussions about uncertainty may impact counselees variably, depending... Show moreUncertainty is increasingly discussed during genetic counseling due to innovative techniques, e.g., multigene panel testing. Discussions about uncertainty may impact counselees variably, depending on counselors' communication styles. Ideally, the discussion of uncertainty enables counselees to cope with uncertainty and make well-informed decisions about testing. We examined the impact of how counselors convey uncertainty and address counselees' uncertainty, and explored the role of individual characteristics. Therefore, a randomized controlled experiment using videos was conducted. Former counselees (N = 224) viewed one video depicting a genetic consultation about multigene panel testing. The extent of counselors' communication of uncertainty (comprehensive vs. the essence) and their response to counselees' uncertainty expressions (providing information vs. providing space for emotions vs. normalizing and counterbalancing uncertainty) were systematically manipulated. Individual characteristics, e.g., uncertainty tolerance, were assessed, as well as outcome variables (primary outcomes: feelings of uncertainty and information recall). No effects were found on primary outcomes. Participants were most satisfied when the essence was communicated, combined with providing information or providing space responses (p = 0.002). Comprehensive information resulted in less perceived steering toward testing (p = 0.005). Participants with lower uncertainty tolerance or higher trait anxiety were less confident about their understanding when receiving comprehensive information (p = 0.025). Participants seeking information experienced less uncertainty (p = 0.003), and trusted their counselor more (p = 0.028), when the counselor used information providing responses. In sum, the impact of discussing uncertainty primarily depends on individual characteristics. Practical guidelines should address how to tailor the discussion of uncertainty. Show less
Visser, L.N.C.; Pelt, S.A.R.; Kunneman, M.; Bouwman, F.H.; Claus, J.J.; Kalisvaart, K.J.; ... ; Hillen, M.A. 2019
Background The development of novel diagnostics enables increasingly earlier diagnosis of Alzheimer's disease (AD). Timely diagnosis may benefit patients by reducing their uncertainty regarding the... Show moreBackground The development of novel diagnostics enables increasingly earlier diagnosis of Alzheimer's disease (AD). Timely diagnosis may benefit patients by reducing their uncertainty regarding the cause of symptoms, yet does not always provide patients with the desired certainty. Objective To examine, using both quantitative and qualitative methods, uncertainty communicated by memory clinic clinicians in post-diagnostic testing consultations with patients and their caregivers. Methods First, we identified all uncertainty expressions of 22 clinicians in audiotaped post-diagnostic testing consultations with 78 patients. Second, we statistically explored relationships between patient/clinician characteristics and uncertainty expressions. Third, the transcribed uncertainty expressions were qualitatively analysed, determining the topic to which they pertained, their source and initiator/elicitor (clinicians/patients/caregivers). Results Within 57/78 (73%) consultations, clinicians expressed in total 115 uncertainties, of which 37% elicited by the patient or caregiver. No apparent relationships were found between patient/clinician characteristics and whether or not, and how often clinicians expressed uncertainty. Uncertainty expressions pertained to ten different topics, most frequently patient's diagnosis and symptom progression. Expressed uncertainty was mostly related to the unpredictability of the future and limits to available knowledge. Discussion and conclusions The majority of clinicians openly discussed the limits of scientific knowledge and diagnostic testing with patients and caregivers in the dementia context. Noticeably, clinicians did not discuss uncertainty in about one quarter of consultations. More evidence is needed on the beneficial and/or harmful effects on patients of discussing uncertainty with them. This knowledge can be used to support clinicians to optimally convey uncertainty and facilitate patients' uncertainty management. Show less
Visser, L.N.C.; Tollenaar, M.S.; Van Doornen, L.J.P.; De Haes, H.C.J.M.; Smets, E.M.A. 2018
Background: Video vignettes are used to test the effects of physicians' communication on patient outcomes. Methodological choices in video-vignette development may have far-stretching consequences... Show moreBackground: Video vignettes are used to test the effects of physicians' communication on patient outcomes. Methodological choices in video-vignette development may have far-stretching consequences for participants' engagement with the video, and thus the ecological validity of this design. To supplement the scant evidence in this field, this study tested how variations in video-vignette introduction format and camera focus influence participants' engagement with a video vignette showing a bad news consultation.Methods: Introduction format (A = audiovisual vs. B = written) and camera focus (1 = the physician only, 2 = the physician and the patient at neutral moments alternately, 3 = the physician and the patient at emotional moments alternately) were varied in a randomized 2 x 3 between-subjects design. One hundred eighty-one students were randomly assigned to watch one of the six resulting video-vignette conditions as so-called analogue patients, i.e., they were instructed to imagine themselves being in the video patient's situation. Four dimensions of self-reported engagement were assessed retrospectively. Emotional engagement was additionally measured by recording participants' electrodermal and cardiovascular activity continuously while watching. Analyses of variance were used to test the effects of introduction format, camera focus and their interaction.Results: The audiovisual introduction induced a stronger blood pressure response during watching the introduction (p = 0.048, eta(2)(partial)=0.05) and the consultation part of the vignette (p = 0.051, eta(2)(partial)=0.05), when compared to the written introduction. With respect to camera focus, results revealed that the variant focusing on the patient at emotional moments evoked a higher level of electrodermal activity (p = 0.003, eta(2)(partial)=0.06), when compared to the other two variants. Furthermore, an interaction effect was shown on self-reported emotional engagement (p = 0.045, eta(2)(partial)=0.04): the physician-only variant resulted in lower emotional engagement if the vignette was preceded by the audiovisual introduction. No effects were shown on the other dimensions of self-reported engagement.Conclusions: Our findings imply that using an audiovisual introduction combined with alternating camera focus depicting patient's emotions results in the highest levels of emotional engagement in analogue patients. This evidence can inform methodological decisions during the development of video vignettes, and thereby enhance the ecological validity of future video-vignettes studies. Show less
Visser, L.N.C.; Bol, N.; Hillen, M.A.; Verdam, M.G.E.; De Haes, H.C.J.M.; Van Weert, J.C.M.; Smets, E.M.A. 2018
