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Attitudes of Research Participants and the General Public Regarding Disclosure of Alzheimer Disease Research Results.

ABSTRACT: Results of Alzheimer disease (AD) research assessments typically are not disclosed to participants. Recent research has suggested interest in disclosure, but, to our knowledge, few studies have accounted for awareness of potential benefits and limitations of disclosure.To determine the attitudes of cognitively normal research participants and members of the general public regarding disclosure of AD research results.Participants in a longitudinal aging study (Alzheimer Disease Research Center [ADRC]) were given preintervention and postintervention surveys about disclosure attitudes. In a general public sample (The American Panel Survey), participants responded to a similar survey about disclosure attitudes.Participants in the ADRC sample were randomly assigned to a group (n = 119) that read an education intervention about the usefulness of AD biomarkers or to a placebo group (n = 100) that read as its intervention general information about the ADRC. Participants in the general public sample read a brief vignette describing participation in a longitudinal AD study.Interest in disclosure of AD research results.Cognitively normal ADRC participants (n = 219) were 60.7% (n = 133) female, 83.6% (n = 183) of white race, and reported a mean of 15.91 years of education. Twenty-nine individuals refused participation. The American Panel Survey participants (n = 1418) indicated they did not have AD and were 50.5% (n = 716) female, 76.7% (n = 1087) of white race, and reported a mean of 13.85 years of education. Overall, 77.6% of eligible participants (1583 of 2041) completed the survey in July 2014. Interest in disclosure was high among the ADRC participants (55.1% [119 of 216] were "extremely interested"). Viewing the education intervention predicted lower interest in disclosure (odds ratio, 2.01; 95% CI, 1.15-3.53; P =?.02). High subjective risk of AD, a family history of AD, and minimal attendance at research meetings were associated with high interest after the intervention. In the general public, interest was lower overall (12.5% [174 of 1389] were "extremely interested"), but the subset of participants most likely to join an AD research study reported higher interest (43.5% [40 of 92] were extremely interested).Experience with AD appears to increase interest in disclosure of AD research results. Learning about potential limitations of disclosure somewhat tempered interest. These findings should inform the development of disclosure policies for asymptomatic individuals in AD studies.

SUBMITTER: Gooblar J

PROVIDER: S-EPMC4694568 | biostudies-literature | 2015 Dec

REPOSITORIES: biostudies-literature

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Attitudes of Research Participants and the General Public Regarding Disclosure of Alzheimer Disease Research Results.

Gooblar Jonathan J Roe Catherine M CM Selsor Natalie J NJ Gabel Matthew J MJ Morris John C JC

JAMA neurology 20151201 12

<h4>Importance</h4>Results of Alzheimer disease (AD) research assessments typically are not disclosed to participants. Recent research has suggested interest in disclosure, but, to our knowledge, few studies have accounted for awareness of potential benefits and limitations of disclosure.<h4>Objective</h4>To determine the attitudes of cognitively normal research participants and members of the general public regarding disclosure of AD research results.<h4>Design, setting, and participants</h4>Pa ...[more]

PMID: 26501506

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Project description:BACKGROUND:Experience with open disclosure and its study are restricted to certain western countries. In addition, there are concerns that open disclosure may be less suitable in non-western countries. The present study explored and compared the in-depth perceptions of the general public and physicians regarding open disclosure in Korea. METHODS:We applied the COREQ (Consolidated Criteria for Reporting Qualitative Research) checklist to this qualitative study. We conducted 20 in-depth interviews and four focus group discussions with 16 physicians and 18 members of the general public. In-depth interviews and focus group discussions were performed according to semi-structured guidelines developed according to a systematic review of open disclosure. We conducted a directed content analysis by analyzing the verbatim transcripts and field notes in accordance with the predetermined guidelines. RESULTS:Open disclosure perceptions were summarized in terms of the "five Ws and one H" (who, what, where, when, why, and how). All physician and general public participants acknowledged the normative justifiability of open disclosure. The participants mostly agreed on the known effects of open disclosure, but the physicians had negative opinions on its expected effects, such as decreased intention of the general public to file lawsuits and increased credibility of medical professionals. Generally, the participants thought that open disclosure is required for medical errors causing major harm. However, the physicians and general public had conflicting opinions on the need for open disclosure of near misses. Most physicians did not know how to conduct open disclosure and some physicians had bad experiences due to inappropriate or incomplete open disclosure. CONCLUSION:Physicians and the general public in Korea acknowledge the need for open disclosure. Guidelines according to the type of patient safety incident are required to encourage physicians to more readily conduct open disclosure. Furthermore, hospitals need to consider organizing a dedicated team and hiring experts for open disclosure.

Dataset Information

Attitudes of Research Participants and the General Public Regarding Disclosure of Alzheimer Disease Research Results.

Publications

Attitudes of Research Participants and the General Public Regarding Disclosure of Alzheimer Disease Research Results.

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