Co-creation of a health literate-sensitive training and conversation aid to support shared decision-making in maternity care.

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 (n = 15) and HCPs (n = 7). Usability, acceptability and comprehension of the conversation aid were tested among new clients (n = 14) and HCPs (n = 6). Acceptability of the training was tested among midwifery students (n = 5). Results: In the co-creation sessions, clients reported to expect that their midwife becomes acquainted with their general values, priorities and daily context. Clients also emphasized wanting to be supported in their preferred decisional role. User test interviews showed that clients and HCPs were positive towards using the conversation aid, but also apprehensive about the time it required. The user test of the training showed that more attention was needed for recognizing and adapting information provision to clients' HL level. Conclusion and innovation: The newly developed conversation aid and training have potential to support HCPs and clients in HL-sensitive SDM.

Effects of prognostic communication strategies on emotions, coping, and appreciation of consultations: An experimental study in advanced cancer.

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 (n = 1036) completed surveys before and after watching 1 video, while imagining being the depicted cancer patient. We investigated effects of the type of disclosure (prognostic disclosure vs. communication of unpredictability vs. non-disclosure) and content of disclosure (standard vs. standard and best-case vs. standard, best- and worst-case survival scenarios; numerical vs. word-based estimates) on emotions, coping, and appreciation of consultations. Moderating effects of individual characteristics were tested. RESULTS: Participants generally reported more satisfaction (p < .001) after prognostic disclosure versus communication of unpredictability and less uncertainty (p = .042), more satisfaction (p = .005), and more desirability (p = .016) regarding prognostic information after numerical versus word-based estimates. Effects of different survival scenarios were absent. Prognostic communication strategies lacked effects on emotions and coping. Significant moderators included prognostic information preference and uncertainty tolerance. SIGNIFICANCE OF RESULTS: In an experimental setting, prognostic disclosure does not cause more negative emotions than non-disclosure and numerical estimates are more strongly appreciated than words. Oncologists' worries about harming patients should not preclude disclosing (precise) prognostic information, yet sensitivity to individual preferences and characteristics remains pivotal.

Effects of Prognostic Communication Strategies on Prognostic Perceptions, Treatment Decisions and End-Of-Life Anticipation in Advanced Cancer: An Experimental Study among Analogue Patients.

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. non-disclosure; standard vs. standard and best-case vs. standard, best- and worst-case survival scenarios; numerical vs. word-based estimates) on prognostic perceptions, treatment decision-making and end-of-life anticipation in advanced cancer. METHODS: This experimental study used eight videos of a scripted oncological consultation, varying only in prognostic communication strategies. Cancer-naive individuals, who imagined being the depicted patient, completed surveys before and after watching one video (n = 1036). RESULTS: Individuals generally perceived dying within 1 year as more likely after prognostic disclosure, compared to communication of unpredictability or non-disclosure (P < 0.001), and after numerical versus word-based estimates (P < 0.001). Individuals felt better informed about prognosis to decide about treatment after prognostic disclosure, compared to communication of unpredictability or non-disclosure (P < 0.001); after communication of unpredictability versus non-disclosure (P < 0.001); and after numerical versus word-based estimates (P = 0.017). Chemotherapy was more often favored after prognostic disclosure versus non-disclosure (P = 0.010), but less often after numerical versus word-based estimates (P < 0.001). Individuals felt more certain about the treatment decision after prognostic disclosure, compared to communication of unpredictability or non-disclosure (P < 0.001). Effects of different survival scenarios were absent. No effects on end-of-life anticipation were observed. Evidence for moderating individual characteristics was limited. CONCLUSION: If and how oncologists discuss prognosis can influence how individuals perceive prognosis, which treatment they prefer, and how they feel about treatment decisions. Communicating numerical estimates may stimulate prognostic understanding and informed treatment decision-making.

Caregivers' attitudes toward blood-based biomarker testing for Alzheimer's disease.

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 (n = 107) with a subsequent focus group (n = 7). We used descriptive statistics and thematic content analysis to identify common themes in answers to open-ended survey questions and focus group data. RESULTS: Most caregivers (72.0%) favored BBBM for AD diagnosis. Provided with hypothetical scenarios, confidence in a normal result decreased significantly if experienced symptoms were more severe (mild: 78.5% vs. severe: 48.6%). Caregivers' attitudes toward BBBM for screening purposes significantly improved with prospect of treatment (53.3% vs. 92.5%). Concerns toward BBBM testing included treatment unavailability, increased/prolonged distress, and AD-related stigma. Potential benefits were actionability, explanation for symptoms, and opportunities for better care and future treatment. DISCUSSION: Emerging AD treatment and reduction of AD-related stigma could profoundly increase public interest in BBBM testing for AD. Highlights: Most informal caregivers would want blood-based biomarker (BBBM) testing for Alzheimer's disease (AD) diagnosis.Perceived (dis)advantages were related to diagnosing AD early.With severe symptoms, there was less confidence in normal BBBM results.Treatment availability would significantly increase interest in BBBM testing for AD.Informal caregivers showed uncertainty regarding the meaning of the term "AD."

What do we mean by "tailoring" of medical information during clinical interactions?

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. To provide clinicians with guidance on how to tailor information to individual patients and to allow researchers to assess the effectiveness thereof, clarity is urgently needed regarding what "tailoring" actually means and what it entails in practice. In this paper we outline the current challenges of applying the concept of "tailoring" to the clinical setting and present existing definitions. Importantly, we introduce a new working definition of the concept that encompasses essential informational and dialogic components. We believe this provisional definition promotes much-needed conceptual precision in how communication researchers and educators define and assess tailored information provision in clinical consultations.

Through the Eyes of Patients: The Effect of Training General Practitioners and Nurses on Perceived Shared Decision-Making Support.

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. The primary outcome was the APs' perceived SDM support with 13 self-developed items reflecting the perceived patient benefit of SDM support as well as the perceived HCP support behavior. Secondary outcomes included an overall rating of SDM support, AP-reported extent of SDM (CollaboRATE), satisfaction with the communication (Patient Satisfaction Questionnaire), conversation appreciation and helpfulness, as well as decision-making satisfaction and confidence (visual analog scale, 0-100). In addition, patient and HCP characteristics associated with AP-perceived SDM support were examined. RESULTS: APs (n = 131) did not significantly differentiate trained from untrained HCPs in their perceptions of SDM support nor in secondary outcomes. Agreement between APs' perceptions was poor. The higher the perceived comparability of the consultation with APs' previous personal experiences, the higher their rating of SDM support. LIMITATIONS: We used a nonvalidated primary outcome and an innovative study design that should be tested in future work. CONCLUSIONS: Despite the limitations of the study design, the training seemed to not affect cancer patients' and survivors' perceived SDM support. IMPLICATIONS: The clinical relevance of the training on SDM support needs to be established. The variation in APs' assessments suggests patients differ in their perception of SDM support, stressing the importance of patient-tailored SDM support. HIGHLIGHTS: Cancer patients and survivors did not significantly differentiate trained from untrained HCPs when evaluating SDM support, and agreement between their perceptions was poor.The clinical relevance of training GPs and nurses in SDM support needs to be established.Patient-tailored SDM support may be recommended, given the variation in APs' assessments and their possible diverging perceptions of SDM support.This innovative study design (having patients watch and assess videos of simulated consultations made in the context of training evaluation) needs to be further developed.

Potential Adverse Outcomes of Shared Decision Making about Palliative Cancer Treatment: A Secondary Analysis of a Randomized Trial.

BACKGROUND: While shared decision making (SDM) is advocated for ethical reasons and beneficial outcomes, SDM might also negatively affect patients with incurable cancer. The current study explored whether SDM, and an oncologist training in SDM, are associated with adverse outcomes (i.e., patient anxiety, tension, helplessness/hopelessness, decisional uncertainty, and reduced fighting spirit). DESIGN: A secondary analysis of a randomized clinical trial investigating the effects of SDM interventions in the context of advanced cancer. The relations between observed SDM (OPTION12), specific SDM elements (4SDM), oncologist SDM training, and adverse outcomes were analyzed. We modeled adverse outcomes as a multivariate phenomenon, followed by univariate regressions if significant. RESULTS: In total, 194 patients consulted by 31 oncologists were included. In a multivariate analysis, observed SDM and adverse outcomes were significantly related. More specifically, more observed SDM in the consultation was related to patients reporting more tension (P = 0.002) and more decisional uncertainty (P = 0.004) at 1 wk after the consultation. The SDM element "informing about the options" was especially found to be related to adverse outcomes, specifically to more helplessness/hopelessness (P = 0.002) and more tension (P = 0.016) at 1 wk after the consultation. Whether the patient consulted an oncologist who had received SDM training or not was not significantly related to adverse outcomes. No relations with long-term adverse outcomes were found. CONCLUSIONS: It is important for oncologists to realize that for some patients, SDM may temporarily be associated with negative emotions. Further research is needed to untangle which, when, and how adverse outcomes might occur and whether and how burden may be minimized for patients. HIGHLIGHTS: Observed shared decision making was related to more tension and uncertainty postconsultation in advanced cancer patientsHowever, training oncologists in SDM did not affect adverse outcomes.Further research is needed to untangle which, when, and how adverse outcomes might occur and how burden may be minimized.

Diversity of Parent Emotions and Physician Responses During End-of-Life Conversations.

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. RESULTS: Forty-six physicians and 22 parents of 12 children participated. In all 49 conversations, parents expressed a broad range of emotions, often intertwining, including anxiety, anger, devotion, grief, relief, hope, and guilt. Both implicit and explicit expressions of anxiety were prevalent. Physicians predominantly responded to parental emotions with cognition-oriented approaches, thereby limiting opportunities for parents. This appeared to intensify parents' expressions of anger and protectiveness, although their anxiety remained under the surface. In response to more tangible emotional expressions, for instance, grief when the child's death was imminent, physicians provided parents helpful support in both affect- and cognition-oriented ways. CONCLUSIONS: Our findings illustrate the diversity of emotions expressed by parents during end-of-life conversations. Moreover, they offer insight into the more and less helpful ways in which physicians may respond to these emotions. More training is needed to help physicians in recognizing parents' emotions, particularly implicit expressions of anxiety, and to choose helpful combinations of responses.

Health literate-sensitive shared decision-making in maternity care: needs for support among maternity care professionals in the Netherlands.

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. Midwives (n = 13) were observed during simulated conversations discussing pain relief options and interviewed afterwards. The client-actors were instructed to portrait specific inadequate HL skills. Observation items focused on adapting communication to HL, and SDM (OPTION-5). RESULTS: In the survey, professionals indicated experiencing most challenges when estimating clients' information comprehension. Observations showed that most midwives created choice awareness and informed clients about options, whereas exploring preferences and actual decision-making together with clients were observed less frequently. Their perceived HL-related obstacles and needs for support related to clients' information comprehension. In the interviews, midwives reported putting much effort into explaining available options in maternity care, but also that decisions about pain relief are often postponed until the moment of labour. CONCLUSION: Professionals' self-reported needs focus on clients' information comprehension. However, observations indicate that it is not the stage of informing, but rather value clarification and actual decision-making that need improvement in HL-sensitive SDM.

Communication about diagnosis, prognosis, and prevention in the memory clinic: perspectives of European memory clinic professionals.

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). We inventoried (1) opinions on communication about (etiological) diagnosis, prognosis, and prevention using 11 statements; (2) current communication practices in response to five hypothetical cases (AD dementia, mild cognitive impairment (MCI), subjective cognitive decline (SCD), with ( +) or without ( -) abnormal AD biomarkers); and (3) needs for communication support regarding ten listed communication skills. RESULTS: The majority of professionals agreed that communication on diagnosis, prognosis, and prevention should be personalized to the individual patient. In response to the hypothetical patient cases, disease stage influenced the inclination to communicate an etiological AD diagnosis: 97% would explicitly mention the presence of AD to the patient with AD dementia, 68% would do so in MCI + , and 29% in SCD + . Furthermore, 58% would explicitly rule out AD in case of MCI - when talking to patients, and 69% in case of SCD - . Almost all professionals (79-99%) indicated discussing prognosis and prevention with all patients, of which a substantial part (48-86%) would personalize their communication to patients' diagnostic test results (39-68%) or patients' anamnestic information (33-82%). The majority of clinicians (79%) would like to use online tools, training, or both to support them in communicating with patients. Topics for which professionals desired support most were: stimulating patients' understanding of information, and communicating uncertainty, dementia risk, remotely/online, and with patients not (fluently) speaking the language of the country of residence. CONCLUSIONS: In a survey of European memory clinic professionals, we found a strong positive attitude towards communication with patients about (etiological) diagnosis, prognosis, and prevention, and personalization of communication to characteristics and needs of individual patients. In addition, professionals expressed a need for supporting tools and skills training to further improve their communication with patients.

Rationale and design of the ABOARD project (A Personalized Medicine Approach for Alzheimer's Disease).

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. The 5-year project is structured into five work packages on (1) diagnosis, (2) prediction, (3) prevention, (4) patient-orchestrated care, and (5) communication and dissemination. ABOARD functions as a network organization in which professionals interact cross-sectorally. ABOARD has a strong junior training program "Juniors On Board." Project results are shared with society through multiple communication resources. By including relevant partners and involving citizens at risk, patients, and their care partners, ABOARD builds toward a future with personalized medicine for AD. Highlights: ABOARD (A Personalized Medicine Approach for Alzheimer's Disease) is a public-private research project executed by 32 partners that functions as a network organization.Together, the project partners build toward a future with personalized medicine for Alzheimer's disease.Although ABOARD is a Dutch consortium, it has international relevance.ABOARD improves diagnosis, prediction, prevention, and patient-orchestrated care.

Nasal oxytocin administration does not influence eye gaze or perceived relationship of male volunteers with physicians in a simulated online consultation: a randomized, placebo-controlled trial.

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.

Prevalence and Predictors of Physician-Patient Discordance in Prognostic Perceptions in Advanced Cancer.

BACKGROUND: Discordance between physicians' and patients' prognostic perceptions in advanced cancer care threatens informed medical decision-making and end-of-life preparation, yet this phenomenon is poorly understood. We sought to: (1) describe the extent and direction of prognostic discordance, patients' prognostic information preferences in cases of prognostic discordance, and physicians' awareness of prognostic discordance; and (2) examine which patient, physician, and caregiver factors predict prognostic discordance. MATERIALS AND METHODS: Oncologists and advanced cancer patients (median survival ≤12 months; n = 515) from 7 Dutch hospitals completed structured surveys in a cross-sectional study. Prognostic discordance was operationalized by comparing physicians' and patients' perceptions of the likelihood of cure, 2-year mortality risk, and 1-year mortality risk. RESULTS: Prognostic discordance occurred in 20% (likelihood of cure), 24%, and 35% (2-year and 1-year mortality risk) of physician-patient dyads, most often involving patients with more optimistic perceptions than their physician. Among patients demonstrating prognostic discordance, the proportion who preferred not knowing prognosis varied from 7% (likelihood of cure) to 37% (1-year mortality risk), and 45% (2-year mortality risk). Agreement between physician-perceived and observed prognostic discordance or concordance was poor (kappa = 0.186). Prognostic discordance was associated with several patient factors (stronger fighting spirit, self-reported absence of prognostic discussions, an information source other than the healthcare provider), and greater physician-reported uncertainty about prognosis. CONCLUSION: Up to one-third of the patients perceive prognosis discordantly from their physician, among whom a substantial proportion prefers not knowing prognosis. Most physicians lack awareness of prognostic discordance, raising the need to explore patients' prognostic information preferences and perceptions, and to tailor prognostic communication.

Towards a future where Alzheimer's disease pathology is stopped before the onset of dementia.

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. While focusing on AD, this Perspective also discusses studies that do not specify the cause of dementia. Future personalized prevention strategies encompass multiple components, including tailored combinations of disease-modifying interventions and lifestyle. By empowering the public and patients to be more actively engaged in the management of their health and disease and by developing improved strategies for diagnosis, prediction and prevention, we can pave the way for a future with personalized medicine, in which AD pathology is stopped to prevent or delay the onset of dementia.

A blended learning for general practitioners and nurses on skills to support shared decision-making with patients about palliative cancer treatment: A one-group pre-posttest study.

OBJECTIVE: To evaluate a newly developed blended learning programme for general practitioners (GPs) and nurses in supporting shared decision making (SDM) about palliative cancer treatment in a simulated setting. METHODS: In a pre-posttest study, healthcare professionals (HCPs) participated in the blended learning (i.e. e-learning and (online) training session). HCPs filled out surveys (T0 (baseline), T1 (after e-learning) and T2 (after full blended learning)) and engaged in simulated consultations at T0 and T2. The primary outcome was observed SDM support (Triple-S; DSAT-10 for validation). Secondary outcomes included satisfaction, knowledge about and attitude towards SDM support. Repeated measures General Linear Models were conducted. RESULTS: 33 HCPs (17 GPs and 16 nurses) participated. SDM support significantly improved after training (Triple-S; medium effect). Observers' overall rating of SDM support (medium effect) as well as HCPs' knowledge (large effect) and beliefs about their capabilities (medium effect) improved after training. There was no difference in decision support skills (DSAT-10), HCPs' other clinical behavioural intentions and satisfaction. HCPs evaluated the training positively. CONCLUSION: Blended learning for HCPs on supporting SDM in palliative cancer care improved their skills, knowledge and confidence in simulated consultations. PRACTICE IMPLICATIONS: These first findings are promising for evaluating interprofessional SDM in clinical practice.

Argumentation in end-of-life conversations with families in Dutch intensive care units: a qualitative observational study.

PURPOSE: In intensive care units (ICUs), decisions about the continuation or discontinuation of life-sustaining treatment (LST) are made on a daily basis. Professional guidelines recommend an open exchange of standpoints and underlying arguments between doctors and families to arrive at the most appropriate decision. Yet, it is still largely unknown how doctors and families argue in real-life conversations. This study aimed to (1) identify which arguments doctors and families use in support of standpoints to continue or discontinue LST, (2) investigate how doctors and families structure their arguments, and (3) explore how their argumentative practices unfold during conversations. METHOD: A qualitative inductive thematic analysis of 101 audio-recorded conversations between doctors and families. RESULTS: Seventy-one doctors and the families of 36 patients from the neonatal, pediatric, and adult ICU (respectively, N-ICU, P-ICU, and A-ICU) of a large university-based hospital participated. In almost all conversations, doctors were the first to argue and families followed, thereby either countering the doctor's line of argumentation or substantiating it. Arguments put forward by doctors and families fell under one of ten main types. The types of arguments presented by families largely overlapped with those presented by doctors. A real exchange of arguments occurred in a minority of conversations and was generally quite brief in the sense that not all possible arguments were presented and then discussed together. CONCLUSION: This study offers a detailed insight in the argumentation practices of doctors and families, which can help doctors to have a sharper eye for the arguments put forward by doctors and families and to offer room for true deliberation.

Motivations of patients and their care partners for visiting a memory clinic. A qualitative study.

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 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.

Patient-Caregiver Dyads' Prognostic Information Preferences and Perceptions in Advanced Cancer.

CONTEXT: Prognostic information is considered important for advanced cancer patients and primary informal caregivers to prepare for the end of life. Little is known about discordance in patients' and caregivers' prognostic information preferences and prognostic perceptions, while such discordance complicates adaptive dyadic coping, clinical interactions and care plans. OBJECTIVES: To investigate the extent of patient-caregiver discordance in prognostic information preferences and perceptions, and the factors associated with discordant prognostic perceptions. METHODS: We conducted secondary analyses of a cross-sectional study (PROSPECT, 2019-2021). Advanced cancer patients (median overall survival ≤12 months) from seven Dutch hospitals and caregivers completed structured surveys (n = 412 dyads). RESULTS: Seven percent of patient-caregiver dyads had discordant information preferences regarding the likelihood of cure; 24%-25% had discordant information preferences regarding mortality risk (5/2/1 year). Seventeen percent of dyads had discordant perceptions of the likelihood of cure; 12%-25% had discordant perceptions of mortality risk (5/2/1 year). Dyads with discordant prognostic information preferences (P < 0.05) and dyads in which patients reported better physical functioning (P < 0.01) were significantly more likely to perceive the one-year mortality risk discordantly. CONCLUSION: Physicians should be sensitive to discordant prognostic information preferences and prognostic perceptions among patient-caregiver dyads in advanced cancer care.

Profiling Cancer Patients Based on Their Motives for Seeking Informational and Emotional Support Online.

Understanding why patients seek informational and/or emotional support online is fundamental to providing patients with accurate and reliable support that is tailored to their needs, preferences, and personal situation. Based on the stress and coping theory and uses and gratifications theory (UGT), this study aimed to identify theoretically-founded profiles of cancer patients differing in their motives for seeking informational and/or emotional support online, and to compare the profiles in terms of patients' psychological and background characteristics, and perception of health care services. Hierarchical cluster analysis was conducted, using questionnaire data from patients visiting a large Dutch health website (N = 181). This revealed three distinctive profiles, i.e., overall seekers (n = 83, 46.0%), occasional information seekers (n = 83, 46.0%), and contact exchangers (n = 15, 8.0%). Patients across these profiles differed in their eHealth literacy, with the contact exchangers being more eHealth literate than the overall seekers and occasional information seekers. The results can be used to create awareness among health care providers, web designers, and patient organizations on different types of cancer patients with different motives for seeking informational and/or emotional support online, and help them to tailor recommendations to and development of (online) sources that fit patients' needs. Future research could further investigate the integration of stress and coping theory with UGT by acknowledging the interplay of different coping strategies and different gratifications.

Cancer patients' trust as a motivator to seek a second opinion and its effects on trust.

OBJECTIVE: 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. DESIGN: A longitudinal mixed methods study including self-report assessments before (T0), immediately following (T1), and two months after the SO (T2). SO consultations (N = 62) were audio recorded, and patient-oncologist communication about the referring oncologist was coded. MAIN OUTCOME MEASURES: Patient-reported motives and their trust in referring oncologists. RESULTS: 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. CONCLUSION: Patients need support to more constructively discuss their treatment relationship. Oncologists need support in providing independent SOs without harming trust relations.