•Discussing uncertain test results was reported to affect counselees’ outcomes.•Effects on distress and worry were most consistent and showed a decrease over time.•For other outcomes, effects were ...sparse and/or inconsistent.•No studies reporting effects on counselor outcomes were found.•Research on how uncertain test results are discussed is warranted.
Cancer genetic counseling increasingly involves discussing uncertain test results, for example because multiple genes are sequenced simultaneously. This review was performed to provide insight into how counselors’ communication of uncertain test results during genetic counseling for cancer affects counselors and counselees.
A systematic mixed studies review was undertaken to review research on the effects of communicating uncertain test results. Four databases were searched using a PICO search strategy. Study findings of articles meeting the inclusion criteria were synthesized narratively.
Twenty-four articles were included. Uncertain test results encompassed either an inconclusive test result or a variant of unknown significance (VUS). Counselees involved almost exclusively women at risk of hereditary breast and/or ovarian cancer. None of the articles reported effects on counselor outcomes. Counselee outcomes were categorized as cognitive, affective or behavioral. Interpretation of a VUS was overall reported as difficult, and counselees’ distress and worry were repeatedly found to decrease over time after the discussion of any uncertain test result. For most other outcomes, findings were sparse and/or inconsistent.
Evidence on effects on counselee outcomes is scant and inconsistent. Future studies are warranted to provide insight into how counselees and counselors are affected.
Clinical practice could benefit from guidelines on how to address uncertain test results during pre- and posttest genetic consultations.
•We analyzed the uncertainties expressed in cancer genetic counseling.•The main sources of uncertainty were not knowing the future and a lack of knowledge.•There was wide variation between ...consultations in how much uncertainty was discussed.•The topics to which counselors’ uncertainty pertained were mainly scientific.•Counselees mainly expressed uncertainty related to personal and practical topics.
Persons seeking cancer genetic counseling mainly aim to obtain information and certainty about their medical situation. However, the information that counselees receive often involves many uncertainties. To develop strategies to enable optimal communication about uncertainties, the spectrum of uncertainty expressed within cancer genetic counseling needs to be established. This study aimed to gain insight into the uncertainties verbally expressed by counselors and counselees.
Twenty-five consultations were audiotaped, transcribed and qualitatively analyzed. A coding scheme identifying all uncertainties was developed parallel to the coding of the transcripts.
Several uncertainties were identified varying in their source (i.e. the cause of uncertainty) and the issues involved (i.e. the topic to which uncertainty pertained). The main sources of uncertainty were the unpredictability of the future and a lack of knowledge. Counselees also expressed uncertainty related to the amount and complexity of the information. Counselors expressed uncertainties mainly related to scientific issues, whereas counselees’ uncertainty mainly related to personal and practical issues.
A wide range of uncertainties was expressed by both groups. Counselors differ from counselees in the degree and types of uncertainty they express.
Counselors should address scientific uncertainties during genetic counseling to increase awareness and understanding in counselees.
Abstract Objective Scripted consultations provide the opportunity to vary and study the effect of specific elements of medical communication. These scripted consultations are role-played, videotaped ...and then judged by analogue patients. Most studies applying this methodology have provided little insight into how they created internally and externally valid written and role-played scripts. In this paper we aim to address this gap by providing a detailed description of a scripted video-vignette study's methodology. Methods Following the five phases of creating and implementing scripted video-vignettes the current study's methodology is described: (1) deciding if video-vignettes are appropriate, (2) developing a valid script, (3) designing valid manipulations, (4) converting the scripted consultations to video, (5) administering the videos in an experiment. Results Following these phases and four validation steps internally and externally valid vignettes were developed. Conclusions The detailed description of the current study's methodology produced general recommendations for scripted video-vignette studies, such as the importance of validating both the written as well as the role-played scripts and involving both experts and lay people in validating the scripts. For other choices no golden standard exists. Practice implications The presented methodology and recommendations may serve as a source of inspiration for future scripted video-vignette studies.
Patients with a rare cancer face challenges, e.g., delayed diagnosis, that may affect trust in the healthcare system and the healthcare professionals (HCPs) involved. This study aimed to explore ...trust of patients with a rare cancer in their HCPs and the healthcare system.
Semi-structured interviews were conducted with 20 purposively sampled patients with a rare cancer. The interview guide included topics related to trust, including level, development, barriers and facilitators, importance, and trust dimensions. Thematic analysis was conducted with use of Atlas.ti.
The mean age of patients was 50 years, 60% were female, and 70% were highly educated. Three themes were constructed: (1) "Confirmed expertise is a prerequisite of trust." Patients need confirmation of their HCPs' expertise, as it could not be assumed due to the rarity of their cancer; (2) "Trust depends on the adequacy of information and how it is provided." Limited information about rare cancer reduced patients' trust in health care, whereas interpersonal trust was mainly affected by how HCPs provided information; and (3) "Trust is built on properly coordinated and supportive care." Proper organization and cooperation within and between hospitals, and integration of supportive care, enhanced trust.
Patients with a rare cancer experience challenges that influence trust in HCPs and the healthcare system. Further research should examine trust among subgroups of patients with a rare cancer, to enable development of tailored interventions.
HCPs may improve trust by focusing on expertise, effective information provision, proper coordination of care, and provision of adequate supportive care.
Uncertainty 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.
Cancer patients increasingly seek second opinion (SO) consultations, but there is scarce empirical evidence to substantiate medical and psychological benefits for patients. This is the first study to ...examine patient- and oncologist-reported (1) motivations and expectations of patients to seek a SO, (2) the perceived medical outcome, and (3) psychological consequences of SOs over time (i.e. patients' uncertainty and anxiety).
This multi-informant longitudinal cohort study (SO-COM) included consecutive cancer patients referred for a SO (N = 70; age 28-85), as well as their referring and consulting oncologists. Outcome measures were completed at three time points: Patients and referring oncologists reported motivations and expectations before the SO (T
0
), patients and consulting oncologists reported the medical outcome of the SO (i.e. discrepancy between first and second opinion) immediately following the SO (T
1
), and patients reported their uncertainty and anxiety at T
0
, T
1
, and two months following the SO (T
2
).
Cancer patients most frequently reported wanting expert advice, exhausting all options, and/or needing more information as motivations for SOs. Referring oncologists rather accurately anticipated these motivations, except most did not recognize patients' information needs. The vast majority of patients (90.0%) received a medical advice similar to the first opinion, although 65.7% had expected to receive a different opinion. Patients' uncertainty (F = 6.82, p=.002; η
2
=.22), but not anxiety (F = 3.074, p=.055, η
2
=.11) was significantly reduced after the SO.
SOs can yield psychological benefits by reducing patients' uncertainty, but the added medical value remains debatable. Referring oncologists may not be fully aware of their patients' information needs. Patients should be better informed about goals and benefits of SOs to better manage their expectations. More cost-effective ways of optimally providing medically and psychologically valuable SOs need to be explored.
Highlights • A scale to assess analogue patients’ engagement with video vignettes did not exist. • We developed the Video Engagement Scale (VES) to assess viewers’ engagement. • The 15-item VES ...reliably and validly measures analogue patients’ engagement. • The VES can be employed to assess ecological validity of a video-vignettes design. • Future research should further test the four-dimensional structure of the VES.
Introduction
The Trust in Oncologist Scale (TiOS) is an 18‐item questionnaire aimed to assess the cancer patients' trust in their oncologist and has been validated in Dutch and English language. This ...study aims to validate the Italian version of the TiOS (IT‐TiOS) and the TiOS‐Short Form (IT‐TiOS‐SF).
Methods
The IT‐TiOS was administered to 194 patients recruited in an Italian oncology department from April to December 2018. Data collected included socio‐demographic data, health and clinical information, satisfaction with the most recent oncology visit and trust in the regional healthcare system. Internal consistency, test–retest reliability, convergent and the structural validity of both the full and short form were tested.
Results
Factor analyses indicated that neither four‐factor nor one‐factor models of the full scale were acceptable. However, confirmatory factor analysis supported the one‐dimensionality of the IT‐TiOS‐SF, and internal consistency assessed with Cronbach's alpha was 0.88. Mean scores on the IT‐TiOS‐SF correlated with satisfaction with the oncologist (rs = 0.64) and willingness to recommend the oncologist to others (rs = 0.67), confirming good construct validity.
Conclusion
The IT‐TiOS‐SF demonstrates good psychometric properties and can be used to assess trust for both clinical and research purposes.
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.
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 × 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.
The audiovisual introduction induced a stronger blood pressure response during watching the introduction (p = 0.048, Formula: see text= 0.05) and the consultation part of the vignette (p = 0.051, Formula: see text= 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, Formula: see text= 0.06), when compared to the other two variants. Furthermore, an interaction effect was shown on self-reported emotional engagement (p = 0.045, Formula: see text= 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.
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.
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. Therefore, oxytocin signaling could serve as a key factor influencing eye gaze as well as the patient–physician relationship. We aimed to test the effects of oxytocin on gaze to the eyes of the physician and the patient–physician relationship by conducting a randomized placebo-controlled crossover trial in healthy volunteers with intranasally administered oxytocin (with a previously effective single dose of 24 IU, EudraCT number 2018-004081-34). The eye gaze of 68 male volunteers was studied using eye tracking during a simulated video call consultation with a physician, who provided information about vaccination against the human papillomavirus. Relationship outcomes, including trust, satisfaction, and perceived physician communication style, were measured using questionnaires and corrected for possible confounds (social anxiety and attachment orientation). Additional secondary outcome measures for the effect of oxytocin were recall of information and pupil diameter and exploratory outcomes included mood and anxiety measures. Oxytocin did not affect the eye-tracking parameters of volunteers’ gaze toward the eyes of the physician. Moreover, oxytocin did not affect the parameters of bonding between volunteers and the physician nor other secondary and exploratory outcomes in this setting. Bayesian hypothesis testing provided evidence for the absence of effects. These results contradict the notion that oxytocin affects eye gaze patterns or bonding.
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