Amyloid PET disclosure in subjective cognitive decline: Patient experiences over time.

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. RESULTS: Independent of amyloid status, participants were satisfied with the consultation (scale 1-10; 7.9 ± 1.7) and information provided (scale 1-4; T1: 3.3 ± 0.9, T2: 3.2 ± 0.8). After 6 months, A+ participants reported more information needs (45% vs. 12%, p = 0.02). Independent of amyloid status, decision regret (scale 1-5; A+: 1.5 ± 0.9, A-: 1.4 ± 0.6, p = 0.53) and negative emotions (negative affect, uncertainty, anxiety) were low (all p > 0.15 and Pinteraction > 0.60). DISCUSSION: Participants with SCD valued amyloid PET disclosure positively, regardless of amyloid status. The need for information after 6 months, which was stronger in A+ individuals, underscores the importance of follow-up. HIGHLIGHTS: Participants with subjective cognitive decline (SCD) positively valued amyloid positron emission tomography (PET) disclosure. Participants with SCD experienced low levels of decision regret. We did not observe an increase in negative emotions. After 6 months, amyloid-positive individuals wanted more information.

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.

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 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.

Implementation barriers and facilitators of remote monitoring, remote consultation and digital care platforms through the eyes of healthcare professionals: a review of reviews.

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. The objective of this umbrella review is to identify key barriers and facilitators involved in digital health technology implementation, from the perspective of HCPs. DESIGN: Systematic umbrella review following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement. DATA SOURCES: Embase.com, PubMed and Web of Science Core Collection were searched for existing reviews dated up to 17 June 2022. Search terms included digital health technology, combined with terms related to implementation, and variations in terms encompassing HCP, such as physician, doctor and the medical discipline. ELIGIBILITY CRITERIA: Quantitative and qualitative reviews evaluating digital technologies that included patient interaction were considered eligible. Three reviewers independently synthesised and assessed eligible reviews and conducted a critical appraisal. DATA EXTRACTION AND SYNTHESIS: Regarding the data collection, two reviewers independently synthesised and interpreted data on barriers and facilitators. RESULTS: Thirty-three reviews met the inclusion criteria. Barriers and facilitators were categorised into four levels: (1) the organisation, (2) the HCP, (3) the patient and (4) technical aspects. The main barriers and facilitators identified were (lack of) training (n=22/33), (un)familiarity with technology (n=17/33), (loss of) communication (n=13/33) and security and confidentiality issues (n=17/33). Barriers of key importance included increased workload (n=16/33), the technology undermining aspects of professional identity (n=11/33), HCP uncertainty about patients' aptitude with the technology (n=9/33), and technical issues (n=12/33). CONCLUSIONS: The implementation strategy should address the key barriers highlighted by HCPs, for instance, by providing adequate training to familiarise HCPs with the technology, adapting the technology to the patient preferences and addressing technical issues. Barriers on both HCP and patient levels can be overcome by investigating the needs of the end-users. As we shift from traditional face-to-face care models towards new modes of care delivery, further research is needed to better understand the role of digital technology in the HCP-patient relationship.

Elevating Patient Engagement: Implementing EHR-Integrated Medication Reminders for Kidney Transplant Patients.

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. Overall, 40.5% of the patients agreed that integrated EHR medication reminders assisted them in taking their medication on time.

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.

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."

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.