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One prominent line of support for nudging in screening programs is the claim that nudging can help 'bad choosers' — that is, it can help some patients make choices more in line with their own values and preferences. In this article, I argue that due to the presence of epistemic risk in many screening programs, the argument that nudging can help 'bad choosers' should be revised or rejected. Expanding on the work of Biddle, J. B. 2020. Epistemic risks in cancer screening: Implications for ethics and policy. Studies in History and Philosophy of Science Part C: Studies in History and Philosophy of Biological and Biomedical Sciences 79: 101200.), I argue that epistemic risk undermines the argument that nudging can help to promote patient autonomy in the context of screening. Specifically, I argue that epistemic risk results in the inclusion of non-patient values and preferences in the screening process, which challenges the claim that nudging can help patients make choices more in line with their own values and preferences. I present four reasons to think epistemic risk undermines the argument in this way: (1) conflicting values; (2) lack of transparency; (3) limited autonomy in opting out; (4) unjustified manipulation. The presence of epistemic risk in screening programs means that nudging may not always be an effective means of promoting patient autonomy and informed consent. As such, epistemic risk poses significant challenges to at least one ethical justification of nudging in screening programs, and raises further questions about the role of nudging in promoting patient decision-making. [ABSTRACT FROM AUTHOR]

Background: Minimally invasive hemorrhoid surgeries like Doppler-Guided Hemorrhoidal Artery Ligation (DGHAL) and Stapled Hemorrhoidopexy (PPH) offer benefits over traditional methods. This study investigated public perceptions and attitudes towards these surgeries, exploring awareness, preferences, and influencing factors. Methods: A detailed questionnaire was disseminated to 2011 participants from various regions of Taiwan in December 2023, gathering data on demographics, understanding of minimally invasive surgery, and attitudes towards hemorrhoid surgery. Chi-square tests were used for analysis (p

AbstractPurposeMaterials and methodsResultsConclusions\nIMPLICATIONS FOR REHABILITATIONThis study explores the views of people living with Motor Neurone Disease (MND) when they consider Percutaneous Endoscopic Gastrostomy (PEG) insertion, to understand their priorities and how their decisions were informed or supported.The study took place in single multidisciplinary specialised MND clinic in New South Wales, Australia. Nine people with MND (5 male and 4 female; age range 52–73 years; disease duration 6–99 months) who were considering, or had recently undergone PEG insertion, participated. Semi-structured interviews were conducted with participants to examine individual’s experience of decision-making about PEG. The data were synthesised and analysed thematically.Three main themes and two sub-themes captured participant views on their decision-making. The first, “What matters most to me,” comprised optimising quality of life and maintaining family membership. The second theme explored “Understanding PEG and the clinical pathway.” The third theme was “Thoughts on using a decision aid.”This study provides a foundation for future studies examining the longer-term outcomes of accepting, delaying or declining PEG. Insights from this study may be applicable to decision-making for any aspect of MND care where the outcomes or benefits are uncertain.People living with Motor Neurone Disease (MND) have complex and individual reasons for accepting or declining Percutaneous Endoscopic Gastrostomy (PEG).The quality of communication between people with MND and healthcare providers may be improved by a shared understanding of how people with MND view quality of life and carer burden in their own circumstances.Enhanced communication for informed choice and patient-centred decision-making have potential to reduce decision regret and support care pathways for those who decline PEG.People living with Motor Neurone Disease (MND) have complex and individual reasons for accepting or declining Percutaneous Endoscopic Gastrostomy (PEG).The quality of communication between people with MND and healthcare providers may be improved by a shared understanding of how people with MND view quality of life and carer burden in their own circumstances.Enhanced communication for informed choice and patient-centred decision-making have potential to reduce decision regret and support care pathways for those who decline PEG. [ABSTRACT FROM AUTHOR]

Introduction: The aim of this study was to evaluate patient reported outcome measures using the EQ5D‐5L and EQ5D‐5L visual analogue scale (VAS) following elective shoulder and elbow orthopaedic list delays. This was further correlated with patients' intention to proceed with the planned surgery. Methods: Patients on the waiting list for more than 26 weeks were included in the study. Telephone interviews were conducted utilising the EQ5D‐5L and the EQ5D‐5L VAS at the time of addition to the waiting list and presently. Results: 75 out of 324 screened patients were eligible. 62 (82.7%) patients still wanted to proceed with their planned procedure while 13 (17.3%) patients in the other group no longer wanted to proceed. There was no statistically significant difference in the mean age, gender, initial trial of conservative treatment and limb laterality between these groups (p < 0.05). There was a statistically significant difference in the mean duration of being on the waiting list between these groups (40.4 ± 19 vs. 62.9 ± 17.5 weeks respectively). Furthermore, statistically significant differences (p < 0.05) in the current EQ5D‐5L VAS scores were observed between these groups (52.4 vs. 65.8 respectively). Conclusion: This study has shown that majority of patients on elective shoulder and elbow orthopaedic lists with prolonged waiting list delays and improved EQ5D‐5L scores are likely to decline the planned procedure and vice versa. Nevertheless, the unplanned 'watchful waiting' caused by the COVID‐19 pandemic and leading to patients deciding to decline surgery, is not a substitute for timely planned surgery to alleviate patients' suffering. [ABSTRACT FROM AUTHOR]

Cancer psychology is a vitally important part of cancer management. Qualitative research is a gateway to exploring this. Weighing the treatment options in terms of quality of life and survival is important. Given the globalization of healthcare seen in the last decade, the exploration of the decision-making process in a developing nation was deemed highly appropriate. The aim is to explore the thoughts of surgical colleagues and care providing clinicians about patient decision-making in cancer care in developing countries, with special reference to India. The secondary objective was to identify factors that may have a role to play in decision-making in India. A prospective qualitative study. The exercise was carried out at Kiran Mazumdhar Shah Cancer Center. The hospital is a tertiary referral center for cancer services in the city of Bangalore, India. A qualitative study by methodology, a focus group discussion was undertaken with the members of the head and neck tumor board. The results showed, in India, decision-making is predominantly led by the clinicians and the patient's family members. A number of factors play an important role in the decision-making process. These include as follows: health outcome measures (quality of life, health-related quality of life), clinician factors (knowledge, skill, expertise, judgment), patient factors (socio-economic, education, cultural), nursing factors, translational research, and resource infrastructure. Important themes and outcomes emerged from the qualitative study. As modern healthcare moves towards a patient-centered care approach, evidence-based patient choice and patient decision-making clearly have a greater role to play, and the cultural and practical issues demonstrated in this article must be considered. [ABSTRACT FROM AUTHOR]

Context: Outcomes in renal cell carcinoma (RCC) are reported inconsistently, with variability in definitions and measurement. Hence, it is difficult to compare intervention effectiveness and synthesise outcomes for systematic reviews and to create clinical practice guidelines. This uncertainty in the evidence makes it difficult to guide patient-clinician decision-making. One solution is a core outcome set (COS): an agreed minimum set of outcomes. Objective: To describe outcome reporting, definitions, and measurement heterogeneity as the first stage in co-creating a COS for localised renal cancer. Evidence acquisition: We systematically reviewed outcome reporting heterogeneity in effectiveness trials and observational studies in localised RCC. In total, 2822 studies (randomised controlled trials, cohort studies, case-control studies, systematic reviews) up to June 2020 meeting our inclusion criteria were identified. Abstracts and full texts were screened independently by two reviewers; in cases of disagreement, a third reviewer arbitrated. Data extractions were double-checked. Evidence synthesis: We included 149 studies and found that there was inconsistency in which outcomes were reported across studies and variability in the definitions used for outcomes that were conceptually the same. We structured our analysis using the outcome classification taxonomy proposed by Dodd et al. Outcomes linked to adverse events (eg, bleeding, outcomes linked to surgery) and renal injury outcomes (reduced renal function) were reported most commonly. Outcomes related to deaths from any cause and from cancer were reported in 44% and 25% of studies, respectively, although the time point for measurement and the analysis methods were inconsistent. Outcomes linked to life impact (eg, global quality of life) were reported least often. Clinician-reported outcomes are more frequently reported than patient-reported outcomes in the renal cancer literature. Conclusions: This systematic review underscores the heterogeneity of outcome reporting, definitions, and measurement in research on localised renal cancer. It catalogues the variety of outcomes and serves as a first step towards the development of a COS for localised renal cancer. Patient summary: We reviewed studies on localised kidney cancer and found that multiple terms and definitions have been used to describe outcomes. These are not defined consistently, and often not defined at all. Our review is the first phase in developing a core outcome set to allow better comparisons of studies to improve medical care.

Abstract Background Technological advances have led to cancer prognostication that is increasingly accurate but often unalterable. However, a reliable prognosis of limited life expectancy can cause psychological distress. People should carefully consider offers of prognostication, but little is known about how and why they decide on prognostication. Using uveal melanoma (UM) patients, we aimed to identify (i) how and why do people with UM decide to accept prognostication and (ii) alignment and divergence of their decision‐making from conceptualizations of a ‘well‐considered’ decision. Methods UM provides a paradigm to elucidate clinical and ethical perspectives on prognostication, because prognostication is reliable but prognoses are largely nonameliorable. We used qualitative methods to examine how and why 20 UM people with UM chose prognostication. We compared findings to a template of ‘well‐considered’ decision‐making, where ‘well‐considered’ decisions involve consideration of all likely outcomes. Results Participants wanted prognostication to reduce future worry about uncertain life expectancy. They spontaneously spoke of hoping for a good prognosis when making their decisions, but largely did not consider the 50% possibility of a poor prognosis. When pressed, they argued that a poor outcome at least brings certainty. Conclusions While respecting decisions as valid expressions of participants' wishes, we are concerned that they did not explicitly consider the realistic possibility of a poor outcome and how this would affect them. Thus, it is difficult to see their decisions as ‘well‐considered’. We propose that nondirective preference exploration techniques could help people to consider the possibility of a poor outcome. Patient or Public Contribution This paper is a direct response to a patient‐identified and defined problem that arose in therapeutic and conversational discourse. The research was informed by the responses of patient participants, as we used the material from interviews to dynamically shape the interview guide. Thus, participants' ideas drove the analysis and shaped the interviews to come.

Abstract Background Empirical evidence supports the use of structured goals of care conversations and documentation of life-sustaining treatment (LST) preferences in durable, accessible, and actionable orders to improve the care for people living with serious illness. As the largest integrated healthcare system in the USA, the Veterans Health Administration (VA) provides an excellent environment to test implementation strategies that promote this evidence-based practice. The Preferences Elicited and Respected for Seriously Ill Veterans through Enhanced Decision-Making (PERSIVED) program seeks to improve care outcomes for seriously ill Veterans by supporting efforts to conduct goals of care conversations, systematically document LST preferences, and ensure timely and accurate communication about preferences across VA and non-VA settings. Methods PERSIVED encompasses two separate but related implementation projects that support the same evidence-based practice. Project 1 will enroll 12 VA Home Based Primary Care (HBPC) programs and Project 2 will enroll six VA Community Nursing Home (CNH) programs. Both projects begin with a pre-implementation phase during which data from diverse stakeholders are gathered to identify barriers and facilitators to adoption of the LST evidence-based practice. This baseline assessment is used to tailor quality improvement activities using audit with feedback and implementation facilitation during the implementation phase. Site champions serve as the lynchpin between the PERSIVED project team and site personnel. PERSIVED teams support site champions through monthly coaching sessions. At the end of implementation, baseline site process maps are updated to reflect new steps and procedures to ensure timely conversations and documentation of treatment preferences. During the sustainability phase, intense engagement with champions ends, at which point champions work independently to maintain and improve processes and outcomes. Ongoing process evaluation, guided by the RE-AIM framework, is used to monitor Reach, Adoption, Implementation, and Maintenance outcomes. Effectiveness will be assessed using several endorsed clinical metrics for seriously ill populations. Discussion The PERSIVED program aims to prevent potentially burdensome LSTs by consistently eliciting and documenting values, goals, and treatment preferences of seriously ill Veterans. Working with clinical operational partners, we will apply our findings to HBPC and CNH programs throughout the national VA healthcare system during a future scale-out period.

Introduction: Overactive bladder (OAB) is often suboptimally addressed by behavioral or pharmacological treatments. Less than 15% of patients choose to pursue advanced OAB therapy (sacral nerve stimulation [SNS], percutaneous tibial nerve stimulation [PTNS], and bladder onabotulinum toxin type‐A [BTX‐A]). We seek to better understand which factors are most important to patients when choosing a third‐line therapy. Methods/Materials: We developed a conjoint analysis survey that included five attributes of the third‐line options for OAB (SNS, PTNS, and BTX‐A). We administered the survey to new patients with urinary incontinence at two institutions. A hierarchical Bayes random effects regression analysis was used to determine the relative importance of the attributes. A choice simulator was used to model which third‐line treatment options patients preferred. We followed patients to see if they pursued their predicted treatment. Results: A total of 108 patients completed the study of whom 89% were women. There was representation from all age groups. The most important attributes of decision‐making were the frequency of future procedures, the risk of catheterization, and the need for a device. On market simulation, SNS was the preferred treatment option (47%), followed by PTNS (29%) and BTX‐A (14%). Only 10% of patients did not find any treatment option acceptable. Conclusions: Frequent follow‐up, risk of catheterization, and the need for a device were the most important attributes when making a decision on third‐line OAB therapy. On market simulation, SNS is the preferred treatment for all age groups though the ultimate choice in third‐line therapy may be affected by external factors. [ABSTRACT FROM AUTHOR]

Colorectal cancer (CRC) screening rates remain suboptimal in the US. We examined patient-focused concerns and influence of various factors (e.g., test attributes, provider recommendation) on CRC screening decision-making. We conducted a web survey with 1595 US adults aged 40–75 from a nationally representative panel in November 2019 (completion rate: 31.3 %). Analyses focused on individuals aged 45–75 years at average-risk for CRC (n = 1062). All participants rated their level of concern about various CRC screening test/procedure attributes. Participants who have screened previously designated the three most important attributes for choosing a screening method and rated how various factors influenced their decision to use a particular method. The top concern for participants who have not screened previously was having an invasive procedure (54.2 %) while the top concerns for participants who have screened previously were completing a colon prep (41.3 %) and test/procedure accuracy (41 %). Cost/insurance coverage was most frequently ranked among the most important attributes (48.5 %), followed by where the test can be taken (45.7 %) and test accuracy (43.6 %). Provider recommendation was reported as the major motivator across screening methods. Other factors that were frequently reported as very influential included convenience and comfort for the stool-based methods and scientific/clinical evidence and insurance coverage for colonoscopy. Variations by age, sex, and race/ethnicity were noted. Findings demonstrate that along with provider recommendation, patient preferences regarding test/procedure attributes and preparation requirements are influential in screening decision-making, highlighting the need for clinicians to involve patients in shared decision-making and incorporate patient needs and preferences in establishing screening strategies.

It is widely supposed that it is important to ensure that patients undergoing medical procedures hope that their treatments will be successful. But why is hope so important, if indeed it is? After examining the answers currently on offer in the literature, we identify a hitherto unrecognized reason for supposing that it is important that patients possess hope for a successful treatment, which draws on prospect theory, Kahneman and Tversky's hugely influential descriptive theory about decision-making in situations of risk and uncertainty. We also consider some concerns about patient consent and the potential manipulation of patients that are raised by our account., (© The Author(s) 2024. Published by Oxford University Press on behalf of the Journal of Medicine and Philosophy Inc.)

Background: Patient preferences toward metabolic bariatric surgery (MBS) remain inadequately explored., Objective: This study aims to identify and analyze the key factors influencing the decision-making process of patients considering MBS., Setting: The research was conducted at the metabolic bariatric surgery clinic of the Medical Research Institute Hospital, Alexandria University, Egypt., Method: Patients with obesity were recruited at the clinic before MBS. The surgical profiles were characterized by attributes including treatment method, recovery and reversibility, treatment tenure, expected weight loss, impact on associated medical problems, risk of complication, side effects, dietary changes, and out-of-pocket costs. Patients engaged in an online survey comprising sociodemographic data, Build Your Own (BYO) section, screening section, and choice tournament section. Adaptive choice-based conjoint analysis was employed to discern the preferences., Results: Of the 299 respondents, the surgical profiles with the highest preference involved a loss of 80% of excess weight without any recurrence (14.67 [95% CI, 14.10-15.23]), 0% risk of complication (13.74 [95% CI, 13.03-14.45]), and absence of adverse effects (11.32 [95% CI, 10.73-11.91]). K-mean cluster analysis identified 2 distinct groups: "patients prioritize weight loss" group prioritized excess weight loss, surgery availability, and diet change, whereas "patients prioritize avoidance of complications" group focused on the risk of complication, adverse effects, and the surgery mechanism., Conclusions: MBS candidates predominantly value weight loss without recurrence, followed by minimization of complication risks and adverse effects, within 3 years postsurgery. Conversely, initial out-of-pocket costs and resolution of medical conditions were deemed the least influential attributes., (Copyright © 2024 American Society for Metabolic and Bariatric Surgery. Published by Elsevier Inc. All rights reserved.)

Background: Technological advances have led to cancer prognostication that is increasingly accurate but often unalterable. However, a reliable prognosis of limited life expectancy can cause psychological distress. People should carefully consider offers of prognostication, but little is known about how and why they decide on prognostication. Using uveal melanoma (UM) patients, we aimed to identify (i) how and why do people with UM decide to accept prognostication and (ii) alignment and divergence of their decision‐making from conceptualizations of a 'well‐considered' decision. Methods: UM provides a paradigm to elucidate clinical and ethical perspectives on prognostication, because prognostication is reliable but prognoses are largely nonameliorable. We used qualitative methods to examine how and why 20 UM people with UM chose prognostication. We compared findings to a template of 'well‐considered' decision‐making, where 'well‐considered' decisions involve consideration of all likely outcomes. Results: Participants wanted prognostication to reduce future worry about uncertain life expectancy. They spontaneously spoke of hoping for a good prognosis when making their decisions, but largely did not consider the 50% possibility of a poor prognosis. When pressed, they argued that a poor outcome at least brings certainty. Conclusions: While respecting decisions as valid expressions of participants' wishes, we are concerned that they did not explicitly consider the realistic possibility of a poor outcome and how this would affect them. Thus, it is difficult to see their decisions as 'well‐considered'. We propose that nondirective preference exploration techniques could help people to consider the possibility of a poor outcome. Patient or Public Contribution: This paper is a direct response to a patient‐identified and defined problem that arose in therapeutic and conversational discourse. The research was informed by the responses of patient participants, as we used the material from interviews to dynamically shape the interview guide. Thus, participants' ideas drove the analysis and shaped the interviews to come. [ABSTRACT FROM AUTHOR]

BackgroundThe increased uptake of contralateral prophylactic mastectomy (CPM) among breast cancer patients remains poorly understood. We hypothesized that the increased rate of CPM is represented in conversations on an online breast cancer community and may contribute to patients choosing this operation.MethodsWe downloaded 328,763 posts and their dates of creation from an online breast cancer community from August 1, 2000, to May 22, 2016. We then performed a keyword search to identify posts which mentioned breast cancer surgeries: contralateral prophylactic mastectomy (n = 7095), mastectomy (n = 10,889), and lumpectomy (n = 9694). We graphed the percentage of CPM-related, lumpectomy-related, and mastectomy-related conversations over time. We also graphed the frequency of posts which mentioned multiple operations over time. Finally, we performed a qualitative study to identify factors influencing the observed trends.ResultsSurgically related posts (e.g., mentioning at least one operation) made up a small percentage (n = 27,678; 8.4%) of all posts on this community. The percentage of surgically related posts mentioning CPM was found to increase over time, whereas the percentage of surgically related posts mentioning mastectomy decreased over time. Among posts that mentioned more than one operation, mastectomy and lumpectomy were the procedures most commonly mentioned together, followed by mastectomy and CPM. There was no change over time in the frequency of posts that mentioned more than one operation. Our qualitative review found that most posts mentioning a single operation were unrelated to surgical decision-making; rather the operation was mentioned only in the context of the patient's cancer history. Conversely, the most posts mentioning multiple operations centered around the patients' surgical decision-making process.ConclusionsCPM-related conversation is increasing on this online breast cancer community, whereas mastectomy-related conversation is decreasing. These results appear to be primarily informed by patients reporting the types of operations they have undergone, and thus appear to correspond to the known increased uptake of CPM.

Introduction: Treatment choice for localized prostate cancer is complicated, as each treatment option comes with various pros and cons. It is well established that active surveillance (AS), may be ended with a change to curative treatment at the time of disease progression, but it is less clear whether secondary treatment after initial curative treatment is required. As part of the PIONEER project, we quantified the probabilities of treatment change. Methods: A cohort study based on PRIAS and ERSPC-Rotterdam data was conducted. Patients were followed up for 10 years or until the 31st of December 2017. The primary outcome was the incidence of treatment change following initial treatment (i.e., a change to curative treatment following AS or secondary treatment after initial RP/RT). Results: Over a period of 1 to 5 years after initial treatment, the cumulative incidence of treatment change ranged from 3.8% to 42.8% for AS, from 7.6% to 12.1% for radical prostatectomy (RP) and from no change to 5.3% for radiation therapy (RT). While the possibility of treatment change in AS is known, the numbers within a five-year period were substantial. For RP and RT, the rate of change to secondary treatment was lower, but still non-neglectable, with 5 (10)-year incidences up to 12% (20%) and 5% (16%), respectively. Conclusion: This is one of the first studies comparing the incidence of guideline-recommended treatment changes in men receiving different primary treatments (i.e., AS, RT, or RP) for localized prostate cancer (PCa). [ABSTRACT FROM AUTHOR]

Abstract Background While catheters are often thought the result of emergency hemodialysis (HD) initiation among patients with little or no pre-dialysis nephrology care, the role of patient level of engagement in care and modality decision-making have not been fully explored. Methods This is a retrospective medical record review of adults (age 18–89 years) who received care in academically affiliated private practice, public hospital, or Veterans Administration settings prior to initiating HD with a catheter between 10/1/2011 and 9/30/2012. Primary predictors were level of patient engagement in nephrology care within 6 months of HD initiation and timing of modality decision-making. Primary outcomes were provider action (referral) and any patient action (evaluation by a vascular surgeon, vein mapping or vascular surgery) toward [arteriovenous fistula or graft, (AVF/AVG)] creation. Results Among 92 incident HD patients, 66% (n = 61) initiated HD via catheter, of whom 34% (n = 21) had ideal engagement in care but 42% (n = 25) had no documented decision. Providers referred 48% (n = 29) of patients for AVF/AVG, of whom 72% (n = 21) took any action. Ideal engagement in care predicted provider action (adjusted OR 13.7 [95% CI 1.08, 175.1], p = 0.04), but no level of engagement in care predicted patient action (p > 0.3). Compared to patients with no documented decision, those with documented decisions within 3, 3–12, or more than 12 months before initiating dialysis were more likely to have provider action toward AVF/AVG (adjusted OR [95% CI]: 9.0 [1.4,55.6], p = 0.2, 37.6 [3.3423.4] p = 0.003, and 4.8 [0.8, 30.6], p = 0.1, respectively); and patient action (adjusted OR [95% CI]: 18.7 [2.3, 149.0], p = 0.006, 20.4 [2.6, 160.0], p = 0.004, and 6.2 [0.9, 44.0], p = 0.07, respectively). Conclusions Timing of patient modality decision-making, but not level of engagement in pre-dialysis nephrology care, was predictive of patient and provider action toward AVF/AVG Interventions addressing patients’ psychological preparation for dialysis are needed.

Objective: To explore the relationships of health literacy, preferred involvement, and patient activation with perceived involvement in care among patients with breast and cervical cancer.Methods: A cross-sectional survey was conducted with patients aged 20 years or older, aware of their cancer diagnosis, and currently receiving care at the National Cancer Center, Mongolia. Descriptive statistics and multivariate regression analysis were used to identify the relationships among study variables.Results: Two hundred twenty-five patients were included in the final analysis. Patients' perceived involvement was examined as two subdomains: patient information seeking (PIS) and patient decision-making (PDM). Patient health literacy was found to only significantly influence PIS, and patient preferred involvement demonstrated a significant influence only on PDM. However, patient activation predictor was found to significantly influence both PIS and PDM (PIS [β = 0.22, p = 0.00] and PDM [β = 0.14, p = 0.00]).Conclusion: Health literacy, preferred involvement, and patient activation each demonstrated distinct influences on patients' perceived involvement subdomains, with patient activation being the most important predictor.Practice Implications: Comprehensive strategies at the healthcare organization, professional, and patient levels may help to facilitate and advance patient involvement in care, and ultimately improve the quality of healthcare services respective to domain of patient-centeredness. [ABSTRACT FROM AUTHOR]

Background: Minimally invasive hemorrhoid surgeries like Doppler-Guided Hemorrhoidal Artery Ligation (DGHAL) and Stapled Hemorrhoidopexy (PPH) offer benefits over traditional methods. This study investigated public perceptions and attitudes towards these surgeries, exploring awareness, preferences, and influencing factors., Methods: A detailed questionnaire was disseminated to 2011 participants from various regions of Taiwan in December 2023, gathering data on demographics, understanding of minimally invasive surgery, and attitudes towards hemorrhoid surgery. Chi-square tests were used for analysis ( p  < 0.05)., Results: Hemorrhoid prevalence was similar across sexes and age groups. About 70 % preferred medical centers or district hospitals for surgery. Postoperative complications were a primary concern, with significant sex differences. Approximately 70 % preferred minimally invasive surgery if costs were below NT$50,000. Medical personnel showed higher awareness of minimally invasive surgery benefits. Most participants relied on personal networks and medical social media for information., Conclusions: The study revealed generally positive perceptions of minimally invasive hemorrhoid surgery, with cost being a significant factor. Knowledge gaps exist, particularly among non-medical personnel. Future initiatives should aim to enhance public awareness of minimally invasive surgery benefits, and policy considerations should address financial aspects of healthcare decisions., Competing Interests: The authors declare that they have no competing interests., (© 2024 The Authors. Published by Elsevier Inc.)

Timely management of frontotemporal dysfunction associated with amyotrophic lateral sclerosis (ALS) has important prognostic and therapeutic implications. However, there remains a paucity of research on best practise recommendations to guide the development of interventions for cognitive and behavioural symptoms as part of ALS care. Accordingly, a focus on illness perceptions may provide a preliminary framework for managing cognitive and behavioural symptoms. The aim of the present study was to explore the nature of illness perceptions among ALS patients with cognitive and behavioural symptoms. A total of 39 patients were recruited from a specialised ALS clinic. Factor analysis showed three independent and clinically interpretable factors corresponding to "cognitive and emotion related ALS perceptions," "cognitive- specific ALS perceptions" and "ALS coherence". Of these factors, greater perceived cognitive and emotional impacts of ALS were associated with an approximate 4-fold increased risk of behavioural changes (p < 0.05). Greater perceived cognitive and emotional impacts of ALS was also associated with more rapid disease progression (p < 0.001). As such, timely provision of intervention addressing perceptions about the impact of ALS on functioning as well as associated emotional distress may optimise clinical management of cognitive and behavioural symptoms of ALS. [ABSTRACT FROM AUTHOR]

Timely management of frontotemporal dysfunction associated with amyotrophic lateral sclerosis (ALS) has important prognostic and therapeutic implications. However, there remains a paucity of research on best practise recommendations to guide the development of interventions for cognitive and behavioural symptoms as part of ALS care. Accordingly, a focus on illness perceptions may provide a preliminary framework for managing cognitive and behavioural symptoms. The aim of the present study was to explore the nature of illness perceptions among ALS patients with cognitive and behavioural symptoms. A total of 39 patients were recruited from a specialised ALS clinic. Factor analysis showed three independent and clinically interpretable factors corresponding to “cognitive and emotion related ALS perceptions,” “cognitive- specific ALS perceptions” and “ALS coherence”. Of these factors, greater perceived cognitive and emotional impacts of ALS were associated with an approximate 4-fold increased risk of behavioural changes (p < 0.05). Greater perceived cognitive and emotional impacts of ALS was also associated with more rapid disease progression (p < 0.001). As such, timely provision of intervention addressing perceptions about the impact of ALS on functioning as well as associated emotional distress may optimise clinical management of cognitive and behavioural symptoms of ALS.

Introduction: Research has described emergency department (ED) use patterns in detail. However, evidence is lacking on how, at the time a decision is made, patients decide if healthcare is required or where to seek care.Methods: Using community-based participatory research methods, we conducted a mixed-methods descriptive pilot study. Due to the exploratory, hypothesis-generating nature of this research, we did not perform power calculations, and financial constraints only allowed for 20 participants. Hypothetical vignettes for the 10 most common low acuity primary care complaints (cough, sore throat, back pain, etc.) were texted to patients twice daily over six weeks, none designed to influence the patient’s decision to seek care. We conducted focus groups to gain contextual information about participant decision-making. Descriptive statistics summarized responses to texts for each scenario. Qualitative analysis of open-ended text message responses and focus group discussions identified themes associated with decision-making for acute care needs.Results: We received text survey responses from 18/20 recruited participants who responded to 72% (1092/1512) of the texted vignettes. In 48% of the vignettes, participants reported they would do nothing, for 34% of the vignettes participants reported they would seek care with a primary care provider, and 18% of responses reported they would seek ED care. Participants were not more likely to visit an ED during “off-hours.” Our qualitative findings showed: 1) patients don’t understand when care is needed; 2) patients don’t understand where they should seek care.Conclusion: Participants were unclear when or where to seek care for common acute health problems, suggesting a need for patient education. Similar research is necessary in different populations and regarding the role of urgent care in acute care delivery. [West J Emerg Med. 2014;15(6):-0]

Abstract Background This is the first qualitative study to explore patient decision-making regarding end-stage kidney disease (ESKD) treatment in sub-Saharan Africa. The study addresses an important gap in the literature concerning choice and decision-making in an international context. Methods The study employed a qualitative research design, using grounded theory methodology. In-depth interviews were conducted with twenty-two adult patients with ESKD in 3 clinical settings in Ghana. Data analysis involved coding and a constant comparative approach to generate key themes. Ethical approval was gained from relevant ethics committees both in Ghana and the United Kingdom. Results Four main factors (personal, financial, healthcare system, and support network) were identified to influence patient decision-making regarding ESKD treatment in Ghana. Treatment was initiated for various reasons, including, initially, the urgent need to avoid premature death. Many approached their condition hoping for a cure and did not always understand the chronic nature of their condition. Financial and geographical inaccessibility of renal replacement therapy (RRT), as well as a relative lack of biomedical treatment choices, made decision making daunting for the individual with ESKD in Ghana. The subject of death or conservative management was not openly discussed. Rather patients did everything possible to seek alternative forms of treatment, including the simultaneous use of other non-RRT and traditional or faith-based healing approaches. Conclusions Whilst similarities exist, this study illuminates stark cultural and contextual differences which make decision-making on ESKD treatment a daunting experience for the individual with ESKD in Ghana - as compared to those in high-income countries. The challenges associated with ESKD management in Ghana calls for meticulous efforts at primary prevention of the disease, including interventions directed at effective management of diabetes mellitus, hypertension and other chronic kidney disease (CKD) precursor conditions. Enhancing information provision would promote informed decision making, particularly within the initial stages of patient decision-making.

Background: While catheters are often thought the result of emergency hemodialysis (HD) initiation among patients with little or no pre-dialysis nephrology care, the role of patient level of engagement in care and modality decision-making have not been fully explored.Methods: This is a retrospective medical record review of adults (age 18-89 years) who received care in academically affiliated private practice, public hospital, or Veterans Administration settings prior to initiating HD with a catheter between 10/1/2011 and 9/30/2012. Primary predictors were level of patient engagement in nephrology care within 6 months of HD initiation and timing of modality decision-making. Primary outcomes were provider action (referral) and any patient action (evaluation by a vascular surgeon, vein mapping or vascular surgery) toward [arteriovenous fistula or graft, (AVF/AVG)] creation.Results: Among 92 incident HD patients, 66% (n = 61) initiated HD via catheter, of whom 34% (n = 21) had ideal engagement in care but 42% (n = 25) had no documented decision. Providers referred 48% (n = 29) of patients for AVF/AVG, of whom 72% (n = 21) took any action. Ideal engagement in care predicted provider action (adjusted OR 13.7 [95% CI 1.08, 175.1], p = 0.04), but no level of engagement in care predicted patient action (p > 0.3). Compared to patients with no documented decision, those with documented decisions within 3, 3-12, or more than 12 months before initiating dialysis were more likely to have provider action toward AVF/AVG (adjusted OR [95% CI]: 9.0 [1.4,55.6], p = 0.2, 37.6 [3.3423.4] p = 0.003, and 4.8 [0.8, 30.6], p = 0.1, respectively); and patient action (adjusted OR [95% CI]: 18.7 [2.3, 149.0], p = 0.006, 20.4 [2.6, 160.0], p = 0.004, and 6.2 [0.9, 44.0], p = 0.07, respectively).Conclusions: Timing of patient modality decision-making, but not level of engagement in pre-dialysis nephrology care, was predictive of patient and provider action toward AVF/AVG Interventions addressing patients' psychological preparation for dialysis are needed. [ABSTRACT FROM AUTHOR]

Abstract Background Advance care planning (ACP) aids can help prepare patients, family members, and physicians for in-the-moment medical decision-making. We wished to describe the content and approach of paper-based ACP aids in order to characterize existing aids and inform the development of a new ACP aid. Methods Paper-based ACP aids were identified through an environmental scan and screened for eligibility. ACP conceptual frameworks and data were gathered via stakeholder engagement and used to inform the coding framework that two investigators used to independently code each aid. A directed content analysis was conducted on these eligible aids. Aids were categorized through a deliberative process with an investigator abstracting general information for each aid. Results Fifteen aids met the eligibility criteria. They ranged in length from 6 to 78 pages with the average aid written at an eighth-grade reading level. The content analysis revealed that many aids encouraged choosing a surrogate decision maker and informed users about legal medical documents. Fewer than half of the aids facilitated patient clarification of values regarding quality of life issues. The authors identified and termed the following three categories of aids: informative; semi-action oriented; and action-oriented. It was often unclear whether patients contributed to the development or testing of the ACP aids reviewed. Conclusions Most existing paper-based ACP aids address legal matters such as completing an advance directive. Only a minority elicited patient values and it was unclear whether any were developed in partnership with patients. Future development of ACP aids should account for patient preferences with a goal of supporting in-the-moment medical decision-making.

Objective: We explored, qualitatively, in a sample of Australian early-stage breast cancer patients eligible for neoadjuvant systemic therapy (NAST): (i) their understanding of the choice of having NAST; (ii) when and with whom the decision on NAST was made; and (iii) strategies used by patients to facilitate their decision on NAST. Methods: A sub-sample of patients participating in a larger intervention trial took part in this study. A total of 24 semi-structured phone interviews were analyzed using framework analysis. Results: A number of women perceived they were not offered a treatment choice. Most patients reported that the decision on NAST was made during or shortly after the initial consultation with their doctor. Women facilitated decision-making by reducing deciding factors and “claiming” the decision. Most women reported that they made the final decision, although they did not feel actively involved in the decision-making process. Conclusions: When deciding on NAST, patient-centered care is not always delivered to patients. Clinicians should emphasize to patients that they have a treatment choice, explain the preference-sensitive nature of deciding on NAST and highlight that patients should be involved in this treatment decision. Providing patients with appropriate time and tailored take-home information might facilitate patient decision-making. Process-orientated research is needed to adequately examine patient involvement in complex treatment decisions.

Background: Studies suggest that black patients have better interactions, on average, with physicians of their own race. Whether this reflects greater "cultural competence" in race-concordant relationships, or other effects of race unrelated to physician behavior, is unclear. It is also unclear if physician race influences patient decision-making.Objective: To determine whether physician race affects patients' ratings of physicians and decision-making, independent of physician behavior.Design: Randomized study using standardized video vignettes.Participants: Primary care patients with coronary risk factors or disease.Interventions: Each participant viewed one of 16 vignettes depicting a physician reviewing cardiac catheterization results and recommending coronary artery bypass graft (CABG) surgery. Vignettes varied only in terms of physicians' race, gender, age, and communication style (high vs. low patient-centeredness).Main Measures: Participants rated the video physician's communication, interpersonal style, competence, trustworthiness, likability, and overall performance (0-4 Likert scales). They also rated the necessity of CABG (0-5 scale) and whether they would undergo CABG or obtain a second opinion if they were the video patient (0-3 scales).Key Results: Participants included 107 black and 131 white patients (72% participation rate). Black participants viewing a black (vs. white) video physician gave higher ratings on all physician attributes (e.g., overall rating 3.22 vs. 2.34, p < 0.001) and were more likely to perceive CABG as necessary (4.05 vs. 3.72, p = 0.03) and say they would undergo CABG if they were the video patient (2.43 vs. 2.09, p = 0.004). Patient-centered communication style reduced, but did not eliminate, the impact of race concordance. Physician race was not associated with any outcomes among white patients.Conclusions: Black patients viewed the doctor in a scripted vignette more positively, and were more receptive to the same recommendation, communicated in the same way, with a black vs. white physician. Patient-centered communication reduced but did not eliminate the effect of physician race. [ABSTRACT FROM AUTHOR]

Abstract Background Pre-dialysis education (PDE) is provided to thousands of patients every year, helping them decide which renal replacement therapy (RRT) to choose. However, its effectiveness is largely unknown, with relatively little previous research into patients’ views about PDE, and no research into staff views. This study reports findings relevant to PDE from a larger mixed methods study, providing insights into what staff and patients think needs to improve. Methods Semi-structured interviews in four hospitals with 96 clinical and managerial staff and 93 dialysis patients, exploring experiences of and views about PDE, and analysed using thematic framework analysis. Results Most patients found PDE helpful and staff valued its role in supporting patient decision-making. However, patients wanted to see teaching methods and materials improve and biases eliminated. Staff were less aware than patients of how informal staff-patient conversations can influence patients’ treatment decision-making. Many staff felt ill equipped to talk about all treatment options in a balanced and unbiased way. Patient decision-making was found to be complex and patients’ abilities to make treatment decisions were adversely affected in the pre-dialysis period by emotional distress. Conclusions Suggested improvements to teaching methods and educational materials are in line with previous studies and current clinical guidelines. All staff, irrespective of their role, need to be trained about all treatment options so that informal conversations with patients are not biased. The study argues for a more individualised approach to PDE which is more like counselling than education and would demand a higher level of skill and training for specialist PDE staff. The study concludes that even if these improvements are made to PDE, not all patients will benefit, because some find decision-making in the pre-dialysis period too complex or are unable to engage with education due to illness or emotional distress. It is therefore recommended that pre-dialysis treatment decisions are temporary, and that PDE is replaced with on-going RRT education which provides opportunities for personalised education and on-going review of patients’ treatment choices. Emotional support to help overcome the distress of the transition to end-stage renal disease will also be essential to ensure all patients can benefit from RRT education.

Abstract Background This paper proposes a refocusing of consent for clinical genetic testing, moving away from an emphasis on autonomy and information provision, towards an emphasis on the virtues of healthcare professionals seeking consent, and the relationships they construct with their patients. Methods We draw on focus groups with UK healthcare professionals working in the field of clinical genetics, as well as in-depth interviews with patients who have sought genetic testing in the UK’s National Health Service (data collected 2013–2015). We explore two aspects of consent: first, how healthcare professionals consider the act of ‘consenting’ patients; and second how these professional accounts, along with the accounts of patients, deepen our understanding of the consent process. Results Our findings suggest that while healthcare professionals working in genetic medicine put much effort into ensuring patients’ understanding about their impending genetic test, they acknowledge, and we show, that patients can still leave genetic consultations relatively uninformed. Moreover, we show how placing emphasis on the informational aspect of genetic testing is not always reflective of, or valuable to, patients’ decision-making. Rather, decision-making is socially contextualised – also based on factors outside of information provision. Conclusions A more collaborative on-going consent process, grounded in virtue ethics and values of honesty, openness and trustworthiness, is proposed.

Background: Over 44,000 women are diagnosed with breast cancer annually in the UK. The research comprised three workstreams (WSs) focused on older women. Maximising survival: WS1 – to identify the role of older women’s and surgeons’ preferences in cancer treatment decisions and whether comorbidity or fitness for surgery has an impact on survival. Minimising complications: WS2 – to assess multifrequency bioimpedance (BEA) compared with perometry in identifying women predisposed to develop lymphoedema after axillary node clearance (ANC) surgery. WS3 – to assess, in women at risk of lymphoedema, whether or not applying compression garments prevents the onset of lymphoedema. Design: WS1 – a prospective, consecutive cohort of surgical consultations with women aged ≥ 70 years with operable breast cancer. Interviews and questionnaire surveys of surgeons’ and women’s perceptions of responsibility for treatment decisions (Controlled Preference Score), effects related to survival and secondary outcomes. WS2 – women undergoing ANC for cancer in 21 UK centres underwent baseline and subsequent BEA, and perometer arm measurements and quality-of-life (QoL) assessments. WS3 – a randomised controlled trial testing standard versus applying graduated compression garments to the affected arm, for 1 year, in WS2 patients developing arm swelling. Setting: Breast outpatient clinics in hospitals with specialist lymphoedema clinics. Participants: WS1 – patients aged ≥ 70 years with newly diagnosed, operable, invasive breast cancer. WS2 – women with node-positive cancer scheduled to undergo ANC. WS3 – WS2 participants developing a 4–9% increase in arm volume. Interventions: WS1 – observational study. WS2 – observational study. WS3 – application of graduated compression garments to affected arm, compared with standard management, for 1 year. Outcomes: WS1 – self-report and clinically assessed health, QoL, complications and survival. WS2 – perometer and bioimpedance spectroscopy (BIS) measurements, QoL and health utility; and sensitivity and specificity of BIS for detecting lymphoedema compared with perometer arm measurements; in addition, a health economics assessment was performed. WS3 – time to the development of lymphoedema [≥ 10% relative arm-volume increase (RAVI)] from randomisation. Results: WS1 – overall, 910 women were recruited, but numbers in the substudies differ depending on consent/eligibility. In a study of patient/surgeon choice, 83.0% [95% confidence interval (CI) 80.4% to 85.6%] had surgery. Adjusting for health and choice, only women aged > 85 years had reduced odds of surgery [odds ratio (OR) 0.18, 95%CI 0.07 to 0.44]. Patient role in treatment decisions made no difference to receipt of surgery. A qualitative study of women who did not have surgery identified three groups: ‘patient declined’, ‘patient considered’ and ‘surgeon decided’. In a survival substudy, adjusting for tumour stage, comorbidity and functional status, women undergoing surgery had one-third the hazard of dying from cancer. Serious complications from surgery were low and not predicted by older age. In a substudy of the effect of surgical decision-making on HRQoL, 59 (26%) received preferred treatment decision-making style. In multivariate analyses, change in HRQoL was associated neither with congruence (p = 0.133) nor with receipt of surgery (p = 0.841). In a substudy of receipt of chemotherapy in women aged ≥ 65 years, adjusting for tumour characteristics, health measures and choice, women aged ≥ 75 years had reduced odds of chemotherapy (OR 0.06, 95%CI 0.02 to 0.16). WS2 – lymphoedema by 24 months was detected in 21.4% of women by perometry (24.4% sleeve application) and in 39.4% by BIS. Perometer and BIS measurements correlated at 6 months (r = 0.61). Specificity for sleeve application was greater for perometry (94% CI 93% to 96%) at 24 months, as was a positive predictive value of 59% (95% CI 48% to 68%). Lymphoedema diagnosis reduced QoL scores. Sleeve application in the absence of RAVI of > 9% did not improve QoL or symptoms. A composite definition of lymphoedema was developed, comprising a 9% cut-off point for perometer and self-reported considerable swelling. Diagnostic accuracy was ≥ 94% at 6, 12 and 24 months. WS3 – the PLACE (Prevention of Lymphoedema After Clearance of External compression) trial recruited 143 patients, but recruitment was slow and closed early on the advice of the Independent Data Monitoring Committee. A qualitative substudy identified a number of barriers to recruitment. Conclusions: Half of older patients felt that they influenced decisions about their treatment. No relationship between decision preference being fulfilled and HRQoL in elderly patients diagnosed with cancer occurred, and older age did not predict complications. Primary surgery reduced the hazard of dying of cancer by two-thirds, independent of age, health and tumour characteristics. Women aged ≥ 75 years have reduced odds of receiving chemotherapy. Lymphoedema (along with a BMI of > 30 kg/m2, cigarette smoking and chemotherapy) reduces QoL. Changes in arm volume of > 9% predicted lymphoedema requiring and benefiting from sleeve application. The PLACE trial qualitative work provides a number of insights into problems of recruitment that were specific to this trial (stigma of compression garments) but that are also generalisable to other RCTs. Limitations: Both WS1 and WS2 were large, multicentre, UK cohort, observational studies. The WS3 PLACE trial has not reported yet but closed with approximately half of the patients originally planned. Future work: Research producing objective measures for sleeve prescription in the NHS is required. Trial registration: Current Controlled Trials ISRCTN48880939. Funding: This project was funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research programme and will be published in full in Programme Grants for Applied Research; Vol. 7, No. 5. See the NIHR Journals Library website for further project information. Additional support for WS1 came from a Breast Cancer Campaign Grant and a NIHR Postdoctoral Fellowship. ImpediMed (Carslbad, CA, USA; www.impedimed.com) provided bioimpedance L-Dex® machines and electrodes for the study and Sigvaris provided the external compression garments free of charge for the (PLACE) trial.

Objective: Decision tools can assist patients and families in making informed choices about treatment options. However, information format can influence understanding of treatment options and subsequent treatment decisions, so it is critical to identify formats that support clear and accurate communication.Method: Forty-five older adults made a hypothetical treatment decision about rt-PA therapy for stroke while viewing risk information presented in one of three graph formats (bar, stacked bar, or iconic array). We investigated decisional uncertainty, study time and memory accuracy as a function of graph format. Eye tracking methods explored format-related differences in graph processing.Results: Decisional uncertainty was higher after studying the bar graph, compared to the stacked bar or iconic graph. The bar graph was also associated with poorer memory and longer overall study time. Eye-tracking indicated that graph information was processed in a different order and to a different extent for the three graph types.Conclusion: Understanding how people process information in decision aids is critical for clear communication with decision-makers.Patient Implications: Format has been shown to impact information processing, and eye-tracking may be a useful tool to understand these format differences and their implications, and to guide the design of decision aids to optimize communication. [ABSTRACT FROM AUTHOR]

Recent research on patient decision-making reveals a disconnect between theories of autonomy, agency, and decision-making and their practice in contemporary clinical encounters. This study examines these concepts in the context of female patients making oncofertility decisions in the United Kingdom in light of the phenomenon of "being guided." Patients experience being guided as a way to cope with, understand, and defer difficult treatment decisions. Previous discussions condemn guided decision-making, but this research suggests that patients make an informed, autonomous decision to be guided by doctors. Thus, bioethicists must consider the multifaceted ways that patients enact their autonomy in medical encounters. [ABSTRACT FROM AUTHOR]

BACKGROUND The outlook for ambulatory patients with advanced heart failure (HF) and the appropriate timing for left ventricular assist device (LVAD) or transplant remain uncertain. The aim of this study was to better understand disease trajectory and rates of progression to subsequent LVAD therapy and transplant in ambulatory advanced HF. METHODS Unlabelled box See Related Editorial, page XXX Patients with advanced HF who were New York Heart Association (NYHA) Class III or IV and Interagency Registry for Mechanically Assisted Circulatory Support (INTERMACS) Profiles 4 to 7, despite optimal medical therapy (without inotropic therapy), were enrolled across 11 centers and followed for the end-points of survival, transplantation, LVAD placement, and health-related quality of life. A secondary intention-to-treat survival analysis compared outcomes for MedaMACS patients with a matched group of Profile 4 to 7 patients with LVADs from the INTERMACS registry. RESULTS Between May 2013 and October 2015, 161 patients were enrolled with INTERMACS Profiles 4 (12%), 5 (32%), 6 (49%), and 7 (7%). By 2 years after enrollment, 75 (47%) patients had reached a primary end-point with 39 (24%) deaths, 17 (11%) undergoing LVAD implantation, and 19 (12%) receiving a transplant. Compared with 1,753 patients with Profiles 4 to 7 receiving LVAD therapy, there was no overall difference in intention-to-treat survival between medical and LVAD therapy, but survival with LVAD therapy was superior to medical therapy among Profile 4 and 5 patients (p = 0.0092). Baseline health-related quality of life was lower among patients receiving a LVAD than those enrolled on continuing oral medical therapy, but increased after 1 year for survivors in both cohorts. CONCLUSIONS Ambulatory patients with advanced HF are at high risk for poor outcomes, with only 53% alive on medical therapy after 2 years of follow-up. Survival was similar for medical and LVAD therapy in the overall cohort, which included the lower severity Profiles 6 and 7, but survival was better with LVAD therapy among patients in Profiles 4 and 5. Given the poor outcomes in this group of advanced HF patients, timely consideration of transplant and LVAD is of critical importance. [ABSTRACT FROM AUTHOR]

Purpose: To examine changes in anxiety over time (trajectories) in men with prostate cancer faced with a decision to participate in a clinical trial and to identify demographic and study variables that predict these trajectories.Methods: Our data come from a larger study examining the efficacy of a decision aid on decisional conflict in men with prostate cancer who were deciding whether to participate in a prostate cancer clinical trial. We used latent growth mixture models to identify 'classes' (i.e. groups) of participants with different trajectories of anxiety, as assessed by the State-Trait Anxiety Inventory state scale, and binary logistic regression to determine predictors of anxiety 'class'.Results: In 128 men with prostate cancer (mean age = 63), growth mixture modelling identified two classes defined by different anxiety trajectories. One class (n = 27) started with a higher mean anxiety score and did not change over time (stable high), whereas the second class (n = 101) started with lower anxiety and significantly reduced over time (low and recovering). None of the demographic and study variables (including age, education, marital status, and decision to join the trial) was predictive of anxiety class.Conclusions: Men treated for prostate cancer who have high levels of anxiety after surgery may continue to have persistent high anxiety levels which do not reduce naturally over time. Patient or disease characteristics do not appear to predict anxiety. It is important, therefore, to monitor for anxiety in this population and refer for psychological interventions where required. [ABSTRACT FROM AUTHOR]

The majority of individuals in the UK opting to terminate a pregnancy complicated by fetal anomaly have a medical rather than a surgical termination. This study provides context, understanding and evidence of the value that they attach to having the option to choose a termination method following a diagnosis of fetal anomaly. Ten women attending a fetal medicine unit participated in qualitative interviews by telephone and in person, explaining decision-making processes for their choice of method, their views on having this choice, and their perception of the value and acceptability of this choice. Important factors included the opportunity to confirm the fetal anomaly, hospitalisation, waiting time, and duration of the process. The emotional effort of carrying the pregnancy was foremost for many women, as was the need for self-preservation from birth trauma. Choice of termination method was felt to be a right for an individual facing a fetal anomaly. • Individuals should be offered a choice of termination method for fetal anomaly and supported to make an informed choice • Individuals require support during the time between the decision to terminate and the procedure, and directly afterwards. • Options for pain management for a medical termination and the choice not to have sight of the fetus should be offered. [ABSTRACT FROM AUTHOR]

Objective: The Menopause Rating Scale (MRS) is one of the most frequently used instruments to evaluate menopausal symptoms; however, no cut-off score is given that would indicate the need for treatment. Our goal was to determine such a cut-off score on the MRS, using as a standard a woman's own perception of her need for treatment in relation to the severity of her symptoms.Material and Methods: The sample comprised 427 healthy women aged 40-59 years who were not taking hormonal treatment. Based on the concept of quality of life, we considered that the patient required treatment if she herself believed that she required it, on the basis of the severity of at least one of her menopausal symptoms. To obtain an optimal MRS cut-off score associated with the need for treatment, an ROC curve analysis was performed.Results: The symptoms rated "very severe" on the MRS (i.e. that most require treatment) were physical and mental exhaustion (95.8% of women) and muscle and joint discomfort (95.1%). In total, 378 women (88.5%) considered that their symptoms required treatment. The ROC curve analysis determined that the optimal cut-off score on the MRS to indicate the need for treatment would be 14 (area under the curve 0.86, p < 0.0001). This score achieved 76.5% sensitivity and 83.6% specificity. With this cut-off score, 97.1% of the women who considered that they required treatment for at least one of their symptoms would be treated. There was concordance of more than 90% between this cut-off score and a score of 4 (i.e. a rating of "very severe") for any of the symptoms on the scale.Conclusions: An MRS score ≥14 indicates the need for treatment for climacteric symptoms. In clinical practice, a score of 4 for any of the MRS items could be taken to indicate the need for treatment. [ABSTRACT FROM AUTHOR]

Existing research in consumer behavior suggests that perceptions and usage of a product post-purchase depends, in part, on how the product was marketed, including price paid. In the current study, we examine the effect of providing an out-ofpocket co-payment for consumer genomic testing (CGT) on consumer post-purchase behavior using both correlational field evidence and a hypothetical online experiment. Participants were enrolled in a longitudinal cohort study of the impact of CGT and completed behavioral assessments before and after receipt of CGT results. Most participants provided a co-payment for the test (N = 1668), while others (N = 369) received fully subsidized testing. The two groups were compared regarding changes in health behaviors and post-test use of health care resources. Participants who paid were more likely to share results with their physician (p = .012) and obtain follow-up health screenings (p = .005) relative to those who received fully subsidized testing. A follow-up online experiment in which participants (N = 303) were randomized to a "fully-subsidized" versus "co-payment" condition found that simulating provision of a co-payment significantly increased intentions to seek follow- up screening tests (p = .050) and perceptions of the test results as more trustworthy (p = .02). Provision of an out-ofpocket co-payment for CGT may influence consumer's post-purchase behavior consistent with a price placebo effect. Cognitive dissonance or sunk cost may help explain the increase in screening propensity among paying consumers. Such individuals may obtain follow-up screenings to validate their initial decision to expend personal resources to obtain CGT. [ABSTRACT FROM AUTHOR]

Background: Pre-dialysis education (PDE) is provided to thousands of patients every year, helping them decide which renal replacement therapy (RRT) to choose. However, its effectiveness is largely unknown, with relatively little previous research into patients' views about PDE, and no research into staff views. This study reports findings relevant to PDE from a larger mixed methods study, providing insights into what staff and patients think needs to improve.Methods: Semi-structured interviews in four hospitals with 96 clinical and managerial staff and 93 dialysis patients, exploring experiences of and views about PDE, and analysed using thematic framework analysis.Results: Most patients found PDE helpful and staff valued its role in supporting patient decision-making. However, patients wanted to see teaching methods and materials improve and biases eliminated. Staff were less aware than patients of how informal staff-patient conversations can influence patients' treatment decision-making. Many staff felt ill equipped to talk about all treatment options in a balanced and unbiased way. Patient decision-making was found to be complex and patients' abilities to make treatment decisions were adversely affected in the pre-dialysis period by emotional distress.Conclusions: Suggested improvements to teaching methods and educational materials are in line with previous studies and current clinical guidelines. All staff, irrespective of their role, need to be trained about all treatment options so that informal conversations with patients are not biased. The study argues for a more individualised approach to PDE which is more like counselling than education and would demand a higher level of skill and training for specialist PDE staff. The study concludes that even if these improvements are made to PDE, not all patients will benefit, because some find decision-making in the pre-dialysis period too complex or are unable to engage with education due to illness or emotional distress. It is therefore recommended that pre-dialysis treatment decisions are temporary, and that PDE is replaced with on-going RRT education which provides opportunities for personalised education and on-going review of patients' treatment choices. Emotional support to help overcome the distress of the transition to end-stage renal disease will also be essential to ensure all patients can benefit from RRT education. [ABSTRACT FROM AUTHOR]

Background and purpose Randomised controlled trials (RCTs) are considered the ‘gold-standard’ for evaluating medical treatments. However, patients and clinicians report difficulties with informed consent and recruitment. We evaluated the utility of a Decision Aid (DA) in reducing RCT-related decisional conflict, and improving RCT knowledge and recruitment. Materials and methods Potential participants for a radiotherapy RCT were invited to participate in the current study. Participants were randomised to receive the RCT’s participant information sheet with or without a DA. Questionnaires were administered at baseline, one and six months. The primary outcome measure was decisional conflict. Secondary outcome measures included knowledge regarding and recruitment to the RCT. Results 129 men were randomised to the DA (63) and control (66) arms. Decisional conflict was significantly lower over 6-months ( p = 0.048) in the DA arm. Knowledge regarding the RCT was significantly higher at 6 months ( p = 0.033) in the DA arm. 20.6% of the DA arm (13 of 63) and 9% of the control arm (6 of 66) entered the RCT. Conclusions This study demonstrates the utility of a DA in reducing decisional conflict and improving trial knowledge in men with cancer who are making decisions regarding RCT participation. [ABSTRACT FROM AUTHOR]

Background The increased uptake of contralateral prophylactic mastectomy (CPM) among breast cancer patients remains poorly understood. We hypothesized that the increased rate of CPM is represented in conversations on an online breast cancer community and may contribute to patients choosing this operation. Methods We downloaded 328,763 posts and their dates of creation from an online breast cancer community from August 1, 2000, to May 22, 2016. We then performed a keyword search to identify posts which mentioned breast cancer surgeries: contralateral prophylactic mastectomy ( n = 7095), mastectomy ( n = 10,889), and lumpectomy ( n = 9694). We graphed the percentage of CPM-related, lumpectomy-related, and mastectomy-related conversations over time. We also graphed the frequency of posts which mentioned multiple operations over time. Finally, we performed a qualitative study to identify factors influencing the observed trends. Results Surgically related posts (e.g., mentioning at least one operation) made up a small percentage ( n = 27,678; 8.4%) of all posts on this community. The percentage of surgically related posts mentioning CPM was found to increase over time, whereas the percentage of surgically related posts mentioning mastectomy decreased over time. Among posts that mentioned more than one operation, mastectomy and lumpectomy were the procedures most commonly mentioned together, followed by mastectomy and CPM. There was no change over time in the frequency of posts that mentioned more than one operation. Our qualitative review found that most posts mentioning a single operation were unrelated to surgical decision-making; rather the operation was mentioned only in the context of the patient's cancer history. Conversely, the most posts mentioning multiple operations centered around the patients' surgical decision-making process. Conclusions CPM-related conversation is increasing on this online breast cancer community, whereas mastectomy-related conversation is decreasing. These results appear to be primarily informed by patients reporting the types of operations they have undergone, and thus appear to correspond to the known increased uptake of CPM. [ABSTRACT FROM AUTHOR]

Background: Complex cardiac rhythm management device (CRMD) therapy provides an important treatment option for people at risk of sudden cardiac death. Despite the survival benefit, device implantation is associated with significant physical and psychosocial concerns presenting considerable challenges for the decision-making process surrounding CRMD implantation for patients and physicians. Aims: The purpose of this scoping review was to explore what is known about how adult (>16 years) patients make decisions regarding implantation of CRMD therapy. Methods: Published, peer reviewed, English language studies from 2000 to 2016 were identified in a search across eight healthcare databases. Eligible studies were concerned with patient decision-making for first time device implantation. Quality assessment was completed using the mixed methods appraisal tool for all studies meeting the inclusion criteria. Results: The findings of eight qualitative and seven quantitative studies, including patients who accepted or declined primary or secondary sudden cardiac death prevention devices, were clustered into two themes: knowledge acquisition and the process of decision-making, exposing similarities and distinctions with the treatment decision-making literature. Conclusion: The review revealed some insight in to the way patients approach decision-making but also exposed a lack of clarity and research activity specific to CRMD patients. Further research is recommended to support the development and application of targeted decision support mechanisms. [ABSTRACT FROM AUTHOR]

Background: This paper proposes a refocusing of consent for clinical genetic testing, moving away from an emphasis on autonomy and information provision, towards an emphasis on the virtues of healthcare professionals seeking consent, and the relationships they construct with their patients.Methods: We draw on focus groups with UK healthcare professionals working in the field of clinical genetics, as well as in-depth interviews with patients who have sought genetic testing in the UK's National Health Service (data collected 2013-2015). We explore two aspects of consent: first, how healthcare professionals consider the act of 'consenting' patients; and second how these professional accounts, along with the accounts of patients, deepen our understanding of the consent process.Results: Our findings suggest that while healthcare professionals working in genetic medicine put much effort into ensuring patients' understanding about their impending genetic test, they acknowledge, and we show, that patients can still leave genetic consultations relatively uninformed. Moreover, we show how placing emphasis on the informational aspect of genetic testing is not always reflective of, or valuable to, patients' decision-making. Rather, decision-making is socially contextualised - also based on factors outside of information provision.Conclusions: A more collaborative on-going consent process, grounded in virtue ethics and values of honesty, openness and trustworthiness, is proposed. [ABSTRACT FROM AUTHOR]