Introduction:
Advance care planning (ACP) is an iterative process of discussing the needs, wishes, and preferences of patients regarding disease-specific and end-of-life issues. There is ample ...evidence that ACP improves the quality of life and promotes the autonomy of patients with cancer and motor neuron disease who have a high disease burden and shortened life expectancy. In Parkinson's disease (PD) though, knowledge about the experiences and preferences of patients regarding ACP is scarce, despite the major disease burden associated with PD.
Aim:
This study aims to explore the experiences, needs, and preferences of PD patients regarding the content and timing of ACP.
Methods:
In-depth interviews were conducted with a purposively selected sample of patients diagnosed with PD. Using a semi-structured topic list, the participants were asked about their prospects for a future living with PD and with whom they wanted to discuss this. Qualitative analysis was performed in parallel with data collection using a data-driven constant comparative approach. The transcribed interviews were coded and analyzed by two researchers using MAXQDA software.
Results:
Of all 20 patients (13 males; age 47–82; disease duration 1–27 years), most expressed a wish to talk about ACP with a healthcare provider, enabling them to anticipate the uncertain future. The majority of patients preferred their healthcare provider to initiate the discussion on ACP, preferably at an early stage of the disease. Nearly all patients expressed the wish to receive more information regarding the long-term impact of PD, although, the preferred timing varied between patients. They also perceived that their neurologist was primarily focused on medication and had little time to address their need for a more holistic approach toward living with PD.
Conclusion:
Our results suggest that PD patients are in need of discussing ACP with their healthcare provider (HCP), even in the early stages of the disease. In addition, PD patients perceive a lack of information on their disease course and miss guidance on available supportive care. We recommend HCPs to inquire the information requirements and preferences of patients regarding ACP regularly, starting soon after diagnosis.
•Oncologists’ non-verbal communication of uncertainty led to reduced patient trust.•Non-verbal uncertainty communication increased second opinion seeking intention.•Non-verbal uncertainty effects ...partly explained by patients’ felt uncertainty.•Neither verbal uncertainty nor oncologists’ gender influenced patient response.•Further research on oncologists’ non-verbal uncertainty behavior is warranted.
Objective: Physicians are increasingly expected to share uncertain information, yet there is concern about possible negative effects on patients. How uncertainty is conveyed and by whom may influence patients’ response. We tested the effects of verbally and non-verbally communicating uncertainty by a male vs. female oncologist on patients’ trust and intention to seek a second opinion.
Methods: In an experimental video vignettes study conducted in The Netherlands, oncologist communication behavior (verbal vs. non-verbal and high vs. low uncertainty) and gender (male vs. female) were systematically manipulated. Former cancer patients viewed one video variant and reported trust, intention to seek a second opinion, and experience of uncertainty.
Results: Non-verbal communication of high uncertainty by the oncologist led to reduced trust (β = -0.72 (SE = 0.15), p < .001) and increased intention to seek a second opinion (β = 0.67 (SE = 0.16), p < .001). These effects were partly explained by patients’ increased experience of uncertainty (β = -0.48 (SE = 0.12), p < .001; and β = 0.34 (SE = 0.09), p < .001 respectively). Neither verbal uncertainty nor oncologists’ gender influenced trust or intention to seek a second opinion.
Conclusion: Non-verbal communication of uncertainty by oncologists may affect patient trust and intention to seek a second-opinion more than verbal communication.
Practice Implications: Further research to understand and improve oncologists’ non-verbal uncertainty behavior is warranted.
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 ...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.
Background. Adjuvant systemic treatment for early stage breast cancer significantly reduces the risk of mortality but is associated with side effects, reducing patients’ quality of life. Decisions ...about adjuvant treatment are preference sensitive and are thus ideally suited to a shared decision making (SDM) approach. Whether and how SDM affects patients’ trust in their oncologist is currently unknown. We investigated the association between patients’ trust in their oncologist and 1) observed level of SDM in the consultation, 2) congruence between patients’ preferred and perceived level of participation, and 3) patient and oncologist characteristics. Methods. Decision consultations (n = 101) between breast cancer patients and their medical oncologist were audio-recorded and transcribed verbatim. Patients’ trust in their oncologist was measured using the Trust in Oncologist Scale (TiOS). The observed level of SDM was scored using the 12-item Observing Patient Involvement In Decision Making scale (OPTION-12), preferred level of participation with the Control Preferences Scale, and perceived level of participation with an open question in telephonic interviews. Results. The average TiOS score was high overall (mean SD = 4.1 .56; range, 2.6–5.0). Low levels of SDM were observed (mean SD = 16 11.6; range, 2–56). Neither observed nor perceived level of participation in SDM was associated with trust. Patients’ preferred and perceived role in decision making was incongruent in almost 50% of treatment decisions. Congruence was not related to trust. A larger tumor size (β = 4.5, P = 0.03) and the use of a risk prediction model during the consultation (β = 4.1, P = 0.04) were associated with stronger trust. Conclusion. Patients reported strong trust in their oncologist. While low levels of SDM were observed, SDM was not associated with trust. These findings suggest it may not be necessary to worry about negative consequences for trust of using SDM or risk prediction models in oncological consultations. Considering the increased emphasis on implementing SDM, it is important to further explore how SDM affects trust in clinical practice.
Physicians and parents of critically ill neonates and children receiving intensive care have to make decisions on the child's behalf. Throughout the child's illness and treatment trajectory, ...adequately discussing uncertainties with parents is pivotal because this enhances the quality of the decision-making process and may positively affect the child's and parents' well-being. We investigated how physicians discuss uncertainty with parents and how this discussion evolves over time during the trajectory.
We asked physicians working in the NICU and PICU of 3 university medical centers to audio record their conversations with parents of critically ill children from the moment doubts arose whether treatment was in the child's best interests. We qualitatively coded and analyzed the anonymized transcripts, thereby using the software tool MAXQDA 2020.
Physicians were found to adapt the way they discussed uncertainty with parents to the specific phase of the child's illness and treatment trajectory. When treatment options were still available, physicians primarily focused on uncertainty related to diagnostic procedures, treatment options, and associated risks and effects. Particularly when the child's death was imminent, physicians had less "scientific" guidance to offer. They eliminated most uncertainty and primarily addressed practical uncertainties regarding the child's dying process to offer parents guidance.
Our insights may increase physicians' awareness and enhance their skills in discussing uncertainties with parents tailored to the phase of the child's illness and treatment trajectory and to parental needs in each specific phase.
•Experimental vignette designs enable systematically testing medical communication.•We sought to advance methodological guidance to researchers using experimental vignettes.•Analogue patients’ ...engagement was not affected by gender congruence or vignette modality.•Creating gender congruent and/or video vignettes may not always be necessary.•Methodological decisions on vignette development should depend on study aims.
Experimental vignette designs are used to systematically test the effects of medical communication. We tested the impact of two methodological choices –gender congruence and vignette modality– on analogue patient reported outcomes.
In an online experiment using a vignette portraying an oncological bad news consultation, we manipulated (1) gender congruence between the analogue and the vignette patient, and (2) vignette modality, i.e., text, audio, or video. Cancer-naïve students acting as analogue patients (N = 209, 22 ± 3 years old, 75% F) were assigned one randomly-selected vignette variant and completed questionnaires. Using 3 × 2 (repeated-measures) ANOVAs, we tested main and interaction effects of gender congruence and modality on self-reported engagement, recall, trust, satisfaction and anxiety.
We found no main effects of gender congruence or modality on any of the outcomes, nor any interaction effects between modality and congruence.
Our results indicate that researchers may needlessly create gender-congruent vignettes at considerable cost and effort. Also, the currently assumed superiority of videos over other modalities for experimental vignette-based research may be inaccurate.
Although further testing in an offline format and among different populations is warranted, decisions regarding gender congruence and modality for future vignette-based studies should be based primarily on their specific aims.
Providing a second opinion (SO) in oncology is complex, and communication during SOs remains poorly understood. This study aimed to systematically observe how patients and oncologists communicate ...about SO-specific topics (i.e., patient motivation, the referring oncologist, treatment transfer/back-referral), and how such communication affects patient satisfaction.
A prospective mixed-methods study of cancer patients seeking a SO (N = 69) and consulting oncologists was conducted. Before the SO, patients reported their expected place of future treatment. Following the SO, patients’ and oncologists’ satisfaction was assessed. All SOs were audio-recorded. Absolute and relative duration of SO-specific talk were calculated and specific events (e.g., questions/utterances) were coded (incl. valence, explicitness).
SOs lasted 19–73 min, of which 3.7% was spent discussing motivations. Oncologists rarely explored patients’ motivations. Talk about referring oncologists (12.5% of consultation) was mostly critical by patients (M = 43.0%), but positive/confirming by consulting oncologists (M = 73.5%). Although 22.2% of patients expected a treatment transfer, this topic (3.3% of consultation time) was rarely explicitly discussed. Patients who were referred back were significantly less satisfied (d = 0.85).
Patient-provider communication in oncological SOs appears insufficiently aligned.
Patients and oncologists need support to explicitly and productively communicate about SO-specific topics and to better manage expectations. Recommendations are provided.
•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.
Cancer patients may seek a second opinion (SO) driven by reduced trust in their own providers. Their trust may be diminished or reinforced through the SO. This study aimed to assess (1) what ...proportion of patients seek SOs motivated by lacking trust and how trust changes over time; (2) whether patients' trust differs by the outcome of the SO (i.e. similar/different opinion); and (3) how communication during the SO affects trust.
A longitudinal mixed methods study including self-report assessments before (T
0
), immediately following (T
1
), and two months after the SO (T
2
). SO consultations (N = 62) were audio recorded, and patient-oncologist communication about the referring oncologist was coded.
Patient-reported motives and their trust in referring oncologists.
Reduced trust motivated 21% of patients to seek a SO. Most patients criticised their referring oncologist. Consulting oncologists generally defended their colleagues, but such affirmation was unrelated to patients' subsequent trust. Over time, trust did not change substantially. Yet, it was restored in patients motivated by impaired trust, and remained low for patients receiving a different medical outcome.
Patients need support to more constructively discuss their treatment relationship. Oncologists need support in providing independent SOs without harming trust relations.
•Most CSTs on improving skills in providing genetic counseling were targeted at non-genetic HCPs.•CSTs vary greatly in the communication behaviors they address and the approaches they use.•No ...articles reporting on effects on HCPs’ behavior in clinical setting nor on patient outcomes were included.•Evidence was lacking on effective features of CST in improving HCPs’ communication skills.
Genetic counselors need advanced communication skills, particularly when discussing tests involving massively parallel sequencing. Increasingly, non-genetic healthcare professionals (HCPs) also need to provide genetic counseling. Communication skills training (CST) may equip HCPs with the required communication skills. This scoping review provides an overview of the content, approach, effectiveness and effective features of CSTs aimed at improving genetic and non-genetic HCPs’ communication skills in providing genetic counseling.
Following the PRISMA-ScR statement, four databases were searched for articles. Two researchers independently screened titles and abstracts, and extracted data. When applicable, information on effectiveness and effective features of CST was collated.
Twenty-three articles were included. Sixteen CSTs targeted non-genetic HCPs, five targeted genetic HCPs and two targeted both. Most CSTs addressed multiple communication behaviors and consisted of role play. CSTs were found to be effective for improving HCPs (mainly self-reported) attitudes and skills. Limited evidence on specific effective features of CST was found.
There is a clear need for evidence on the effectiveness of CST on improving both HCPs’ communication skills in the context of genetic counseling, and patient outcomes, and its specific effective features.
Clinical practice could benefit from evidence-based CST for genetic and non-genetic HCPs.
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