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Orthopedics Jan 2010
Topics: Conflict of Interest; Disclosure; Editorial Policies; Humans; Scientific Misconduct
PubMed: 20052947
DOI: 10.3928/01477447-20100101-02 -
Chronic Illness Sep 2023Illness disclosure refers to when individuals with chronic illnesses make decisions to tell others about their disease. There is a lack of research on the complexity of... (Review)
Review
OBJECTIVE
Illness disclosure refers to when individuals with chronic illnesses make decisions to tell others about their disease. There is a lack of research on the complexity of disclosure among children and youth with chronic illnesses. We conducted a review of the literature to understand the process of disclosure among children and youth with chronic illnesses in the context of peer-based relationships.
METHODS
A narrative review was completed using three databases. The search yielded 11 articles that utilized various research designs.
RESULTS
Most of the literature was qualitative in nature. Most children and youth engaged in non-disclosure and concealment which is born out of fears of discrimination. Fewer children and youth engaged in unplanned disclosure, passive disclosure, partial disclosure, and open disclosure. Children and youth carefully consider who they are disclosing to and perceptions about other peoples' responses strongly impact disclosure. Children and youth disclose verbally, behaviorally, and in written form. Disclosure is associated with both positive and negative effects, such as confidence, self-advocacy, and distress.
DISCUSSION
Health providers and researchers should critically support disclosure and empower children and youth with the resources they need to be agents in their own disclosure decisions.
Topics: Humans; Adolescent; Child; Disclosure; Communication; Chronic Disease; Truth Disclosure
PubMed: 35787158
DOI: 10.1177/17423953221110152 -
Journal of Medical Ethics Jun 1985
Topics: Complementary Therapies; Confidentiality; Minors; Parental Notification; Physician-Patient Relations; Trust; Truth Disclosure
PubMed: 4009641
DOI: 10.1136/jme.11.2.92 -
PloS One 2021This paper empirically examines whether there is an association between financial reporting disclosure quality and sustainability disclosure quality of the top 100...
This paper empirically examines whether there is an association between financial reporting disclosure quality and sustainability disclosure quality of the top 100 socially reputed Chinese listed firms. The paper computed financial disclosure quality by empirically combining earning qualities of accrual, persistence, predictability, and smoothness. Using content analysis and survey questionnaire research methods, it calculated sustainability quality by combining disclosure quantity (through quantitative weightings), disclosure type (through qualitative weightings), and disclosure item importance (through qualitative weightings) of economic, social, and environmental disclosures made in annual and sustainability reports, ascertained using the Global Reporting Initiative sustainability framework. The study finds that sustainability disclosure in the current period is sufficiently associated with financial disclosure quality of the current period and future period. Consistent with stakeholder theory, firms with a social reputation are perceived as trustworthy by stakeholders and shareholders. The findings lead to a cultural stakeholder theory where underlying values of societal culture create a condition supporting mutual stakeholder relationships between firm and various stakeholders. Demonstrating trustworthiness through disclosures can help boost consumer confidence and foreign trade relations for Chinese firms. The Chinese government can design innovative schemes to reward and promote trustworthiness in firms, such as regulating base-point reductions in interest rates on borrowing or raising funds.
Topics: China; Disclosure; Environmental Policy; Government; Humans; Income; Industry; Sustainable Development
PubMed: 34048431
DOI: 10.1371/journal.pone.0250884 -
Blood Jun 2021In this issue of , Martin Merinero et al identified the mechanism of excessive complement activation caused by recurrent mutations in factor H–related protein-1...
In this issue of , Martin Merinero et al identified the mechanism of excessive complement activation caused by recurrent mutations in factor H–related protein-1 (FHR-1) in a few patients with atypical hemolytic uremic syndrome (aHUS). These are rare mutations in a rare disease, but the results provide a better understanding of complement regulation.
Topics: Truth Disclosure
PubMed: 34165547
DOI: 10.1182/blood.2021011364 -
Brain and Behavior Mar 2016Although incidental findings (IF) are commonly encountered in neuroimaging research, there is no consensus regarding what to do with them. Whether researchers are... (Review)
Review
BACKGROUND
Although incidental findings (IF) are commonly encountered in neuroimaging research, there is no consensus regarding what to do with them. Whether researchers are obligated to review scans for IF, or if such findings should be disclosed to research participants at all, is controversial. Objective data are required to inform reasonable research policy; unfortunately, such data are lacking in the published literature. This manuscript summarizes the development of a radiology review and disclosure system in place at a neuroimaging research institute and its impact on key stakeholders.
METHODS
The evolution of a universal radiology review system is described, from inception to its current status. Financial information is reviewed, and stakeholder impact is characterized through surveys and interviews.
RESULTS
Consistent with prior reports, 34% of research participants had an incidental finding identified, of which 2.5% required urgent medical attention. A total of 87% of research participants wanted their magnetic resonance imaging (MRI) results regardless of clinical significance and 91% considered getting an MRI report a benefit of study participation. A total of 63% of participants who were encouraged to see a doctor about their incidental finding actually followed up with a physician. Reasons provided for not following-up included already knowing the finding existed (14%), not being able to afford seeing a physician (29%), or being reassured after speaking with the institute's Medical Director (43%). Of those participants who followed the recommendation to see a physician, nine (38%) required further diagnostic testing. No participants, including those who pursued further testing, regretted receiving their MRI report, although two participants expressed concern about the excessive personal cost. The current cost of the radiology review system is about $23 per scan.
CONCLUSIONS
It is possible to provide universal radiology review of research scans through a system that is cost-effective, minimizes investigator burden, and does not overwhelm local healthcare resources.
Topics: Disclosure; Humans; Incidental Findings; Magnetic Resonance Imaging; Neuroimaging; Physicians; Research; Surveys and Questionnaires
PubMed: 26893955
DOI: 10.1002/brb3.428 -
JAMA Network Open Mar 2022This randomized clinical trial investigates the effect of partial vs full disclosure of potential assignment to placebo on participant blinding, perceptions of group... (Randomized Controlled Trial)
Randomized Controlled Trial
Effect of Partial vs Full Disclosure of Potential Assignment to Placebo on Participant Blinding, Perceptions of Group Assignment, and Trial Outcomes: A Randomized Clinical Trial.
This randomized clinical trial investigates the effect of partial vs full disclosure of potential assignment to placebo on participant blinding, perceptions of group assignment, and clinical outcomes.
Topics: Disclosure; Double-Blind Method; Humans; Treatment Outcome
PubMed: 35323953
DOI: 10.1001/jamanetworkopen.2022.4050 -
JAMA Ophthalmology May 2019Beside the goal of increasing transparency to the public, disclosure policies and laws have been established with a goal to also reduce ethically questionable financial...
IMPORTANCE
Beside the goal of increasing transparency to the public, disclosure policies and laws have been established with a goal to also reduce ethically questionable financial relationships between physicians and the medical industry. Data on these relationships should be reviewed to understand the association between these policies and laws and the attainment of reduced relationships.
OBJECTIVE
To assess whether disclosure policies and laws have been associated with a decrease in financial disclosure reporting by physicians.
DESIGN, SETTING, AND PARTICIPANTS
This cross-sectional study uses yearly data from 2008 through 2015 from the participants in the American Academy of Ophthalmology's Annual Meeting. Trends in financial disclosures over time were investigated for the association of disclosure policies and laws with potentially beneficial, as well as ethically questionable physician-industry ties. Linear regression models were used to estimate the annual change in financial disclosures and are reported with 95% CIs.
EXPOSURES
Disclosure policies and laws.
MAIN OUTCOMES AND MEASURES
The annual aggregate financial disclosures by type (ie, consultant, lecturer, employee, grant support, equity owner, patent holder).
RESULTS
Financial disclosures increased from 3966 in 2008 to 5266 in 2015 (P < .001). The number of disclosures reported in the categories consultant, equity owner, patents, and grant support all increased from 2008 to 2015 (consultant disclosures, 121 [95% CI, 88-155] per year; P < .001; equity owner disclosures, 32 [95% CI, 22-42] per year; P < .001; patent disclosures, 19 [95% CI, 13-26] per year; P < .001; grant support disclosures, 78 [95% CI, 48-107] per year; P < .001), while the employee and lecturer categories did not change significantly. The percentage of financial disclosures in the lecturer category decreased relative to the total (estimate, -1.1% [95% CI, -1.3% to -0.8%] per year; P < .001), owing to the number of financial disclosures for this category remaining stable while most other types increased.
CONCLUSIONS AND RELEVANCE
Disclosure was not associated with a chilling effect (decrease in financial disclosures associated with potentially beneficial physician-industry ties). Disclosure was associated with a possible disinfecting effect, whereby the percentage of ethically questionable disclosures (ie, lecturers) decreased, although the frequency remained stable. A permissive effect (physicians becoming more inclined to having industry relationships) was also observed. Thus, disclosure rules should be enhanced or alternative approaches to disclosure reconsidered to promote a decrease in ethically questionable relationships.
Topics: Conflict of Interest; Cross-Sectional Studies; Disclosure; Humans; Industry; Physicians; United States
PubMed: 30816947
DOI: 10.1001/jamaophthalmol.2019.0085 -
Atencion Primaria May 2021
Topics: Biomedical Research; COVID-19; Disclosure; Humans; Publishing; Uncertainty
PubMed: 33756259
DOI: 10.1016/j.aprim.2021.102015 -
Public Health Nutrition Feb 2016
Topics: Disclosure; Humans
PubMed: 26849208
DOI: 10.1017/S1368980016000070