Preferences For Disclosure Research Articles

Analyst Coverage Decisions: The Role of Corporate Disclosure Choices and the Influence Effects of Peer Analysts’ Disclosure Preferences

Analyst Coverage Decisions: The Role of Corporate Disclosure Choices and the Influence Effects of Peer Analysts’ Disclosure Preferences

A qualitative study on women’s breast cancer diagnosis disclosure preferences and disclosure experiences in a middle-income country

With the increasing cancer incidence in Ghana especially breast cancer among women, its diagnosis and prognosis present enormous fear and worry for women and their families. Thus, breaking the news of breast cancer diagnosis to patients presents enormous difficulty to healthcare professionals. AimThis study sought to explore the preferences of people living with breast cancer regarding the disclosure of their diagnosis. MethodsThe study used an exploratory-descriptive qualitative design to recruit and interviewed 17 women diagnosed with breast cancer and receiving treatment in a National Radiotherapy and Nuclear Medicine Center of a major Teaching Hospital in Ghana. Data were analyzed using Braun and Clarke’s 2006 thematic analysis approach. FindingsTwo major themes, six subthemes, and five sub-subthemes were generated from the data. The study found that patients preferred detailed information on the stage of their cancer diagnosis, treatment options, and the lifestyle necessary to enhance their health. The participants preferred that the news of their diagnosis be broken to them gradually in the form of a conversation with consolatory gestures, without any hidden information. From the study, clinicians do not follow any specific systematic method in the disclosure process, clinicians used a conversation approach involving consolation, encouragement, comic words, and pampering mostly in disclosing cancer diagnosis which was found relieving.In conclusion, People living with breast cancer prefer full gradual disclosure of diagnosis in a conducive environment in the presence of loved ones in a humane manner.

The ALIGN Framework: A Parent-Informed Approach to Prognostic Communication for Infants With Neurologic Conditions.

Clinicians often communicate complex, uncertain, and distressing information about neurologic prognosis to parents of critically ill infants. Although communication tools have been developed in other disciplines and settings, none address the unique needs of the neonatal and pediatric neurology context. We aimed to develop a parent-informed framework to guide clinicians in communicating information about neurologic prognosis. Parents of infants with neurologic conditions in the intensive care unit were enrolled in a longitudinal study of shared decision-making from 2018 to 2020. Parents completed semistructured interviews following recorded family meetings with the health care team, at hospital discharge, and 6 months after discharge. All interviews targeted information about parent preferences for prognostic disclosure. We analyzed the data using a conventional content analysis approach. Two study team members independently coded all interview transcripts, and discrepancies were resolved in consensus. We used NVIVO 12 qualitative software to index and organize codes. Fifty-two parents of 37 infants completed 123 interviews. Parents were predominantly mothers (n = 37/52, 71%) with a median age of 31 (range 19-46) years. Half were Black (n = 26/52, 50%), and a minority reported Hispanic ethnicity (n = 2/52, 4%). Inductive analysis resulted in the emergence of 5 phases of prognostic communication (Approach, Learn, Inform, Give support, and Next steps: ALIGN): (1) Approach: parents appreciated receiving consistent information about their child's neurologic outcome from clinicians who knew their child well. (2) Learn: parents valued when clinicians asked them how they preferred receiving information and what they already knew about their child's outcome prior to information delivery. (3) Inform: parents valued honest, thorough, and balanced information that disclosed prognostic uncertainty and acknowledged room for hope. (4) Give support: parents valued empathic communication and appreciated clinicians who offered real-time emotional support. (5) Next steps: parents appreciated clinicians who connected them to resources, including peer support. The ALIGN framework offers a novel, parent-informed strategy to effectively communicate neurologic prognosis. Although ALIGN represents key elements of a conversation about prognosis, each clinician can adapt this framework to their own approach. Future work will assess the effectiveness of this framework on communication quality and prognostic understanding.

Rejecting Reforms, Yet Calling for Change: A Qualitative Analysis of Proposed Reforms to the Residency Application Process.

Annual increases in the number of residency applications burden students and challenge programs. Several reforms to the application process have been proposed; however, stakeholder input is often overlooked. The authors examined key stakeholders' opinions about several proposed reforms to the residency application process and identified important factors to guide future reforms. Using semistructured interviews, the authors asked educational administrators and trainees to consider 5 commonly proposed reforms to the residency application process: Match to obtain residency interviews, preference signaling, application limits, geographic preference disclosure, and abolishing the Match. The authors conducted a modified content analysis of interview transcripts using qualitative and quantitative analytic techniques. Frequency analysis regarding the acceptability of the 5 proposed reforms and thematic analysis of important factors to guide reform were performed. Fifteen-minute interviews were conducted between July and October 2019, with data analysis completed during a 6-month period in 2020 and 2021. Participants included 30 stakeholders from 9 medical specialties and 15 institutions. Most participants wanted to keep the Match process intact; however, they noted several important flaws in the system that disadvantage students and warrant change. Participants did not broadly support any of the 5 proposed reforms. Two themes were identified: principles to guide reform (fairness, transparency, equity, reducing costs to students, reducing total applications, reducing work for program directors, and avoiding unintended consequences) and unpopular reform proposals (concern that application limits threaten less competitive students and signaling adds bias to the system). Key stakeholders in the residency application process believe the system has important flaws that demand reform. Despite this, the most commonly proposed reforms are unacceptable to these stakeholders because they threaten fairness to students and program workload. These findings call for a larger investigation of proposed reforms with a more nationally representative stakeholder cohort.

To Tell or Not: Chinese Older Adults' Preferences for Disclosing or Concealing Serious Illness Diagnoses.

Knowledge of one's medical diagnosis is critical for end-of-life decision making. However, a patient's right to know their diagnosis is neither guaranteed nor protected by law in China. Doctors typically inform family members of the patient's illness diagnosis and prognosis and let the family decide whether to disclose this information to the patient. This study examines midlife and older Chinese adults' preferences for disclosure of their own and significant others' diagnoses, and the sociodemographic, economic, and cultural factors associated with these preferences. We surveyed 571 adults ages 50+ in Shanghai from 2021 to 2022. Our outcome measures are preferences for diagnosis disclosures, including whether and to whom diagnoses should be disclosed. We characterize preference types using latent class analysis, and estimate multinomial logistic regression to identify the covariates associated with each preference type. Three latent classes were identified. The transparent group (34%) believed patients, whether self or a significant other, should be informed of their own diagnoses. The contradictory group (50%) held conflicting attitudes; they preferred to know their own diagnosis but preferred that significant others not be informed of their diagnoses. The avoidant group (16%) preferred not to know their own diagnosis and similarly preferred not to disclose significant others' diagnoses to them. Familism attitudes were positively associated with holding contradictory views. Experiences with hospitalization and medical decision making for family members were associated with holding transparent views. We discuss the importance of illness disclosure for honoring patients' autonomous decision making.

Patient values and preferences regarding prognostic counseling in isolated REM sleep behavior disorder.

Isolated REM sleep behavior disorder (iRBD) carries a high lifetime risk for phenoconversion to a defined neurodegenerative disease (NDD) including Parkinson disease, dementia with Lewy bodies, and multiple system atrophy. We aimed to examine iRBD patient values and preferences regarding prognostic counseling. One hundred thirteen iRBD patient participants enrolled in the Mayo Clinic iRBD Patient Registry were sent an email survey concerning their values and preferences concerning NDD prognostic counseling and their experiences following diagnosis with iRBD. Of 81 respondents (71.7% response rate), the majority were men (74.0%) with an average age of 65.7 (±9.7) years. Responses indicated a strong preference toward receiving prognostic information about possible future NDD development. 92.5% of respondents felt knowledge concerning personal NDD risk was important, while 87.6% indicated prognostic discussions were important to maintaining trust in their physician. 95.7% indicated a desire for more information, while only 4.3% desired less information regarding their NDD prognostic risk. Most respondents strongly agreed that prognostic information was important to discuss with their family and friends and inform future life planning, and most expressed interest in learning more about future neuroprotective therapies and symptomatic treatments for parkinsonism and dementia. Most iRBD patients indicated strong preferences for disclosure of NDD prognostic risk and indicated that prognostic information was important for family discussions and future life planning. Future broader surveys and qualitative studies of clinic-based and ultimately community dwelling iRBD patients' values and preferences are needed to guide appropriately tailored and individualized prognostic counseling approaches following iRBD diagnosis.

Preferences and Perceptions of Medical Error Disclosure Among Marginalized Populations: A Narrative Review.

Disclosure of medical errors, in which a health care provider informs the patient/family of the error and takes responsibility, is an ethical imperative. Little is known about how medical error disclosure preferences or perceptions may vary for patients who are people of color, are older, or have lower educational attainment. The researchers conducted a narrative review on medical errors and disclosure. Included were studies in high-income countries that included a predominantly marginalized population, defined by any one of the following: older age adults (mean age > 65 years); low educational attainment (> 55% of participants with less than a high school education); and/or racial/ethnic minority (< 55% of participants identifying as non-Hispanic white for US studies). The literature search yielded 3,050 articles, resulting in 6 studies included for analysis. Four studies used hypothetical vignettes; 1 used focus groups, and 1 used a survey. Three studies met the marginalized population criteria based on education; 3 met the criteria based on race/ethnicity. No study met the inclusion criteria for age. All 6 articles examined patient preferences for disclosure, and 2 studies also examined patient perceptions of disclosure. Overall, participants preferred that medical errors be disclosed to them. Most of the studies lacked multiple regression analysis to investigate differences in disclosure preferences by race/ethnicity, age, and education. Participants from marginalized populations may have similar disclosure preferences to white and highly educated participants. Future studies should aim to examine differences in error disclosure preferences among patients who have experienced adverse events across race/ethnicity, educational attainment, and age.

Communication about sexual orientation and gender between clinicians, LGBT+ people facing serious illness and their significant others: a qualitative interview study of experiences, preferences and recommendations

BackgroundHealthcare organisations have legal and ethical duties to reduce inequalities in access to healthcare services and related outcomes. However, lesbian, gay, bisexual and/or transgender (LGBT+) people continue to experience and...

Prognostic Discussion for Infants with Neurologic Conditions: Qualitative Analysis of Family Conferences.

We characterize the content and role of prognostic discussion for infants with neurologic conditions. In this descriptive qualitative study, we prospectively enrolled infants (age < 1 year) in the intensive care unit with a neurologic condition anticipated to have ≥1 family conference about prognosis or goals of care. We audiorecorded family conferences as they occurred. We used a rapid-cycle qualitative approach to identify and refine themes. Forty infants and 61 parents were enrolled; 68 family conferences occurred for 24 infants. The majority of infant cases (n=23/24, 96%) and conferences (n=64/68, 94%) included discussion of neurologic prognosis. Common infant diagnoses included prematurity (n=12, 52%), genetic conditions (n=9, 35%), and brain malformations (n=7, 30%). We identified 2 themes relating to the characterization of the infant's prognosis: (1) predictions of impairment and (2) rationale for prognostic predictions. We identified 3 themes characterizing the role of prognostic discussion: (1) aligning parent and clinician understanding of infant outcome, (2) influencing decision-making, and (3) preparing for life at home. We identified 2 themes characterizing discussion of prognostic uncertainty: (1) multilayered types of uncertainty and (2) holding space for hope alongside uncertainty. In this cohort of infants with neurologic conditions and their parents, we identified salient themes characterizing the content and role of discussion about neurologic outcome. Our findings highlight that prognostic discussion focuses on anticipated impairments, informs decision-making, and helps families prepare for home life. Future work should characterize whether these findings align with parent preferences for prognostic disclosure. ANN NEUROL 2022;92:699-709.

Ratings of the reasons for and against the disclosure of an Alzheimer’s disease diagnosis: has anything changed in the past 20 years?

Objectives The disclosure of an Alzheimer’s disease diagnosis poses challenges for health care professionals, patients, and their families. Past research has shown that people favour disclosure, but it is uncertain if this situation has changed. Method We used a cross-sectional online survey to explore disclosure preferences in a sample of young adults (n = 229; 66.7% aged 18 − 25 years, 79.5% Australian born). Factors contributing to preferences were also examined (knowledge, experience, close experience, age, relationship to diagnosis recipient). Established measures were used to assess knowledge (the Alzheimer’s Disease Knowledge Test) and preferences (the Reasons for Wanting to Know Questionnaire). Results Most (95%) but not all participants favoured disclosure, whilst recognising as important at least one reason against it. Only age was a significant determinant of preferences (older people were more likely to prefer disclosure). Those against disclosure cited the fear of suicide as a key reason. Conclusion The right to know remains a primary reason for preferring disclosure. Health care professionals should use pre-diagnostic interviewing to discuss overall preference and the underpinning reasons both for and against disclosure. Focus should be on developing a person-centred approach that responds to concerns, with further research to evaluate this approach.

Reporting Demographic Variables in JOBM and JAP: A Comparison and Call to Action

ABSTRACT Data on participant demographics (e.g., gender, race/ethnicity, socioeconomic status) can be used to evaluate the existence of disparities and other correlations between the impact of an intervention and people’s intersecting identities (e.g., race, ethnicity, gender) yet these data are seldom reported in behavior-analytic studies. To date, no review has been conducted evaluating the reporting of demographic variables within the subfield of organizational behavior management (OBM). OBM interventions often involve multiple participants across levels of an organization, posing unique considerations for reporting demographic variables and potentially identifiable information in accordance with an organization’s preference for disclosure and human resource policies. Interventions in industrial/organizational psychology may encounter similar barriers to reporting demographic variables. Therefore, we reviewed articles published in the Journal of Organizational Behavior Management (JOBM) and the Journal of Applied Psychology (JAP) from 2015 to 2021 to evaluate current trends in the reporting of demographic variables. Studies that included participants and presented data (i.e., both applied and laboratory research; N = 205) were included for review and were coded based on the setting, method, and reported demographic variables. Results indicated that age and gender/sex were reported in about half of studies in JOBM and most studies in JAP, but race, socioeconomic status, and first language were rarely reported across journals. Considerations for reporting demographic variables in OBM and the utility of those data are discussed.

Racial differences in trust and risk disclosure preferences among older research volunteers screened for prodromal synucleinopathies (P17-13.002)

Racial differences in trust and risk disclosure preferences among older research volunteers screened for prodromal synucleinopathies (P17-13.002)

PD02-11 WHEN AND HOW TO DISCLOSE GENITAL SURGERY TO GIRLS WITH CAH? EXPERIENCES AND PREFERENCES OF WOMEN WITH CAH

You have accessJournal of UrologyCME1 May 2022PD02-11 WHEN AND HOW TO DISCLOSE GENITAL SURGERY TO GIRLS WITH CAH? EXPERIENCES AND PREFERENCES OF WOMEN WITH CAH Ashley W. Johnston, Mimi S. Kim, Paul Kokorowski, Devon J. Hensel, Patrice M. Yasuda, and Konrad M. Szymanski Ashley W. JohnstonAshley W. Johnston More articles by this author , Mimi S. KimMimi S. Kim More articles by this author , Paul KokorowskiPaul Kokorowski More articles by this author , Devon J. HenselDevon J. Hensel More articles by this author , Patrice M. YasudaPatrice M. Yasuda More articles by this author , and Konrad M. SzymanskiKonrad M. Szymanski More articles by this author View All Author Informationhttps://doi.org/10.1097/JU.0000000000002517.11AboutPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsReprints ShareFacebookLinked InTwitterEmail Abstract INTRODUCTION AND OBJECTIVE: To describe experiences and preferences of disclosing childhood genital surgery to females with congenital adrenal hyperplasia (CAH). METHODS: We conducted an anonymous cross-sectional online survey of CAH females (46XX, ≥16 years [y] old), living in Canada and the United States, who underwent genital surgery before age 4y. Data included experiences and preferences of initial (“first time you were told”) and complete disclosure (“told all details of the surgery”). Non-parametric statistics were used. RESULTS: Median age of 59 participants was 37y. The 76% of women who received complete disclosure were younger (median age: 33y) and underwent surgery more recently (median decade of surgery: 1980s) than the 14% who received only initial disclosure (median: 47y, 1970s) and 10% without any disclosure (median: 61y, 1960s, p=0.0003). Median age of initial and complete disclosure was 7-10y and 11-13y years, respectively (Table). Disclosure was preferred by 58 (98%) women, with initial disclosure by age 14y and complete disclosure by 18y. Most disclosures were by women’s mothers (initial: 82%, complete: 64%). Doctors were more involved in the complete (47%) vs. initial disclosures (13%, p<0.001), coinciding with women’s preferences to include their mothers (72%) and doctors (43%) in the disclosure process. Complete disclosure had predominately neutral/mixed and positive effects, rather than negative, on relationships with parents (neutral/mixed: 68%, positive: 18%, negative: 7%, unknown: 7%) and doctors (neutral/mixed: 64%, positive: 21%, negative: 14%, unknown: 2%). CONCLUSIONS: Disclosure of childhood genital surgery to women with CAH has increased over time. Although timing of disclosures varied, women preferred disclosure, initiating it before age 14y and complete disclosure before age 18y. Disclosure may benefit relationships with parents and physicians. Source of Funding: Departmental research funding © 2022 by American Urological Association Education and Research, Inc.FiguresReferencesRelatedDetails Volume 207Issue Supplement 5May 2022Page: e39 Advertisement Copyright & Permissions© 2022 by American Urological Association Education and Research, Inc.MetricsAuthor Information Ashley W. Johnston More articles by this author Mimi S. Kim More articles by this author Paul Kokorowski More articles by this author Devon J. Hensel More articles by this author Patrice M. Yasuda More articles by this author Konrad M. Szymanski More articles by this author Expand All Advertisement PDF DownloadLoading ...

Clinician approaches to communicating a dementia diagnosis: An interview study.

BackgroundIndividuals with cognitive impairment and their families place a high value on receiving a dementia diagnosis, but clinician approaches vary. There is a need for research investigating experiences of giving and receiving dementia diagnoses. The current study aimed to investigate clinician approaches to giving dementia diagnoses as part of a larger study investigating patient, caregiver, and clinician experiences during the diagnosis encounter.MethodInvestigators conducted telephone interviews with Florida-based clinicians who give dementia diagnoses either rarely or commonly. Interviews employed a semi-structured interview guide querying communication practices used by clinicians when giving dementia diagnoses and how clinicians learned to give dementia diagnoses. Investigators used a descriptive qualitative design to conduct a thematic analysis of data.ResultsFifteen Florida-based clinicians participated, representing diverse backgrounds related to gender, race/ethnicity, specialty, and practice setting. Participants reported using patient- and family-centered communication practices including checking patient understanding, communicating empathically, and involving family members. Some clinicians explicitly asked patients and/or family members about their preferences regarding diagnosis disclosure; many clinicians tailored their disclosure based on patient and family characteristics or reactions. Some clinicians reported using specific diagnoses, while others used general terms such as “memory disorder.” Clinicians reported positively framing information, including instilling hope, focusing on healthy behaviors, and discussing symptom management. Finally, clinicians provided patient/family education and arranged follow up. Clinicians reported learning approaches to dementia diagnosis disclosure through formal training and self-education.ConclusionsDiverse Florida-based clinicians described dementia disclosure practices largely consistent with published guidance, but clinicians varied on approaches relating to soliciting patient disclosure preferences and terminology used. Clinicians caring for diverse populations described that cultural background affects the disclosure process, but more research is needed regarding this finding and best practices for individuals from different backgrounds.

Racial Differences in Trust and Risk Disclosure Preferences Among Older Registered Research Volunteers Screened for Prodromal Synucleinopathies.

Background/ObjectivesThe equitable enrollment of minority participants in synucleinopathy trials is an emerging public health concern. Differing views regarding risk disclosure may influence research involvement in at-risk adults.MethodsWe conducted a brief mailed survey, including questions about trust and hypothetical risk disclosure preferences, to 100 participants in the Healthier Black Elders Center cohort in Detroit, MI and 100 participants in the Claude D. Pepper Older Americans Independence Center Research Participant Program at the University of Michigan.Results125 recipients without a diagnosis of a neurodegenerative disorder returned the survey, 52 (41.6%) of whom identified as being Black or African American. Black respondents reported less trust in medical providers (t=2.02, p=0.045) and medical researchers (t=2.52, p=0.013) and a greater desire to be informed about the presence of unchangeable risk factors for neurodegenerative disorders (t=2.02, p=0.045).ConclusionsThese findings have implications for the recruitment of representative populations in prodromal neurodegenerative research.

Supply chain disclosure: stakeholder preferences versus current practice in Australia

AbstractSupply chain reporting has gained increased scrutiny as companies expand their global supplier networks, address climate change risks/opportunities and with the recent introduction of modern slavery legislation. The question remains as to whether supply chain disclosures address stakeholder requirements. We compare the supply chain disclosure preferences of 20 stakeholders with current disclosure practice for a sample of large listed companies in Australia. We contribute to the emerging supply chain disclosure literature by documenting the factors driving and hindering supply chain disclosure. Further, we offer theoretical and policy implications arising from analysis of stakeholder preferences, drivers and challenges to supply chain reporting.

Disease knowledge and preferences for disclosure of information in patients with rheumatoid arthritis

Objectives: To verify the level of knowledge about rheumatoid arthritis (RA) and the patient’s preferences for disclosure of information by the physician in patients with RA, we compared with a control group of patients without RA.&#x0D; Methods: We evaluated 30 patients diagnosed with RA, according to the ACR criteria, and 30 patients with other diseases pared for age, gender, level of education, and disease duration followed in an Out-Patient Service. Clinical-demographic data as age, gender, level of education, and disease duration were obtained from both groups. We applied questionnaires to evaluate the level of knowledge about RA (10 questions) with answers yes or no, and the patient’s preference for disclosure of information by the physician (4 questions) in a Likert scale from a) strongly agree to e) strongly disagree to both groups. The questionnaires were validated for Portuguese by the method of translation and re-translation. The Ethical Committee at the Pontifical Catholic University approved the study, and we obtained informed consent from all patients. When appropriat-ed, statistical analysis of the data included the chi-square test and student’s t-test. The significance level was 0.05.&#x0D; Results: Over 30 patients with RA, 27 patients (90%) were women, the mean age was 50.8 years old, with a mean of 3.03 years on school, and mean disease duration of 10.6 years. The knowledge about RA as a mean reached 5.36 points in 10 as a correct answer in RA patients and 5.13 in controls. Concerning the patient’s preference for disclosure of information by the physician, the results varied between 23.3% and 90% in the answers strongly agree or agree in the group of RA patients and 6.6% to 90% in controls. In a specific question about "patients with RA should not play a role in managing their disease because the physician is the one in charge," 56.6% of RA patients agreed, and 46,6% of controls too. Only one question about patient’s preference for disclosure of information by the physician “When there is more than one way to treat a problem, I should be told about each one” there was a trend to differ between the controls and the RA patients (p=0.06). The analysis of the results showed no statistical difference in answers to the questionnaires between RA patients and controls.&#x0D; Conclusion: Our results showed that RA patients, compared to control patients with other non-rheumatic diseases, do not show differences to the level of knowledge about rheumatoid arthritis (RA) and the patient’s preferences for disclosure of information by the physician.&#x0D;

PrivItem2Vec: A privacy-preserving algorithm for top-N recommendation

To significantly protect the user’s privacy and prevent the user’s preference disclosure from leading to malicious entrapment, we present a combination of the recommendation algorithm and the privacy protection mechanism. In this article, we present a privacy recommendation algorithm, PrivItem2Vec, and the concept of the recommended-internet of things, which is a privacy recommendation algorithm, consisting of user’s information, devices, and items. Recommended-internet of things uses bidirectional long short-term memory, based on item2vec, which improves algorithm time series and the recommended accuracy. In addition, we reconstructed the data set in conjunction with the Paillier algorithm. The data on the server are encrypted and embedded, which reduces the readability of the data and ensures the data’s security to a certain extent. Experiments show that our algorithm is superior to other works in terms of recommended accuracy and efficiency.

Patient preferences for prognostic counseling in idiopathic/isolated REM sleep behavior disorder

AbstractBackgroundTo examine patient preferences regarding prognostic counseling for idiopathic/isolated REM sleep behavior disorder (iRBD). Idiopathic/isolated REM sleep behavior disorder (iRBD) carries an approximate 73‐91% long term risk for phenoconversion to dementia with Lewy bodies (DLB) and Parkinson disease (PD). Previous research has shown that most providers counsel their patients concerning this risk, yet patients’ values and preferences regarding counseling are unknown.Methods122 participants with iRBD in the Mayo Clinic iRBD Patient Registry enrolled. Participants were sent a survey concerning prognostic counseling and their experience in being diagnosed with iRBD.ResultsOf 81 respondents (67.2% response rate), 74% were men with an average age of 65.7 ± 9.7 years. Responses indicated a strong preference toward receiving prognostic information; 92.5% felt knowledge concerning neurodegenerative disease risk was important, while 87.6% felt prognostic discussion was important to maintain trust in their physician. Additionally, 95.7% indicated they desired more information, while only 4.3% would have desired less information regarding prognostic risk following iRBD diagnosis. Most respondents agreed strongly that prognostic information was important for discussions with their family and friends and future life planning, and expressed interest in learning more about future neuroprotective therapies and symptomatic treatments for parkinsonism and dementia.ConclusionsiRBD patients indicated a strong preference for disclosure of neurodegenerative prognostic risk information, preferred more rather than less information, and felt prognostic information was important for family discussions and life planning. This data informs prognostic counseling practices regarding iRBD and other neurodegenerative diseases.

Preferences of the Saudi Population in Breaking Bad Medical News: A Regional Study.

ObjectiveTo explore the preference among the Saudi population regarding breaking bad news (BBN) for the participant cases and their relatives and to determine the associated sociodemographic factors.MethodA cross-sectional study was conducted among patients and companions attending inpatient and outpatient clinics of a tertiary care hospital in Western Saudi Arabia from 15 Jan to 30 May 2015. A six-item scale was designed to assess preference regarding diagnosis disclosure in three hypothetical conditions including chronic disease, incurable disease, and cancer if the participant or a close relative is concerned, separately. A BBN preference score (BBN-PS) was computed (range=0-6), with a higher score indicating a greater preference to disclose the diagnosis. Eventual motivations for diagnosis disclosure or withholding were explored.ResultFive hundred participants were included; 56.0% were females and 55.0% were aged between 18 and 25 years. Preference to be informed with one’s diagnosis varied between 81.8% for incurable disease and 94.2% for chronic disease with complications. Preference to inform a relative with their diagnosis ranged between 69.0% for incurable disease and 86.8% for chronic disease with complications. Preference for diagnosis withholding was lower among participants of the younger age category (38.2% vs 51.2% or higher, p=0.002), with higher education (42.4% vs 60.8%, p=0.001), and working or studying in the medical field (39.7% vs 51.9%, p=0.006), compared to their counterparts, respectively. The most common motivations toward diagnosis disclosure preference were to enable the concerned person participate in their therapeutic decision (36.4%) and cope with the disease (27.4%); while preference toward diagnosis withholding was most commonly motivated by apprehensions regarding the psychological and social impact of the diagnosis (61.6%).ConclusionA non-negligible proportion of individuals prefer concealing a diagnosis of cancer or incurable disease to a relative, with an inter-generational disparity showing a shift to diagnosis disclosure in the young generations. There is an unmet need for evidence-based protocols for BBN based on a comprehensive assessment of patients’ expectations and needs, considering their cultural and religious values as well as the specific sociodemographic and clinical factors.