A Survey of Knowledge and Views Concerning Genetic and Amyloid PET Status Disclosure.
Ontology highlight
ABSTRACT: Introduction
This survey characterizes viewpoints of cognitively intact at-risk participants in an Alzheimer prevention registry if given the opportunity to learn their genetic and amyloid PET status.Methods
207 participants were offered a 25-item survey. They were asked if they wished to know their ApoE and amyloid PET status, and if so, reasons for wanting to know, or not, and the effects of such information on life plans.Results
164 (79.2%) of registrants completed the survey. Among those who were unaware of their ApoE or amyloid PET results, 80% desired to know this information. The most common reasons for wanting disclosure were to participate in research, to arrange personal affairs, to prepare family for illness, and to move life plans closer into the future. When asked if disclosure would help with making plans to end one's life when starting to lose their memory, 12.7% vs. 11.5% responded yes for ApoE and amyloid PET disclosures, respectively. Disclosure of these test results, if required for participation in a clinical trial, would make 15% of people less likely to participate. Likelihood of participation in prevention research and the desire to know test results were not related to scores on brief tests of knowledge about the tests.Discussion
These results suggest that stakeholders in AD prevention research generally wish to know biological test information about their risk for developing AD to assist in making life plans.
SUBMITTER: Ott BR
PROVIDER: S-EPMC4804344 | biostudies-literature |
REPOSITORIES: biostudies-literature
Similar Datasets
Project description:ImportanceClinical guidelines currently recommend against amyloid imaging for cognitively unimpaired persons. The goal of Alzheimer's disease (AD) prevention, together with advances in understanding the pathophysiology of AD, however, has led to trials testing drugs in cognitively unimpaired persons who show evidence of AD biomarkers. Assuming the eventual success of such trials, millions of patients will be affected. There is a need to understand the effects of biomarker disclosure on those individuals.DesignThe Study of Knowledge and Reactions to Amyloid Testing (SOKRATES) involved 2 semi-structured telephone interviews with individuals who received amyloid PET scan results as part of screening for research participation. Post-disclosure interviews were conducted at 4 to 12 weeks and again 1 year later. Data were collected from November 5, 2014 to November 30, 2016. Interviews were transcribed and coded in NVivo 12.0.Participants80 adults aged 65 and older: 50 who received "elevated" and 30 who received "not-elevated" amyloid PET scan results.Main outcomesInterviews examined four domains: (1) comprehension of the amyloid PET scan result; (2) implications of the result for sense of self, memory, and future; (3) sharing of results with others; and (4) AD risk-reduction behaviors.ResultsParticipants who received an elevated amyloid PET scan result viewed the result as more serious and sensitive than other medical test results given its unique implications for identity, self-determination, and stigma. In contrast, participants who received a not-elevated amyloid PET scan result described feeling relief and reinterpreted perceived memory impairments as normal aging. Participants with elevated amyloid reported contemplating and making more changes to health behaviors and future plans than their peers with not-elevated amyloid.ConclusionsClinical practice in the diagnosis and treatment of persons with preclinical AD, a stage of the disease defined by the presence of biomarkers in the absence of cognitive impairment, will need to address matters of identity, stigma, and life-planning.
| S-EPMC7018056 | biostudies-literature
Project description:BackgroundDiagnostic tests, such as amyloid-β positron emission tomography (PET) scans, can increase appropriate therapeutic management for the underlying causes of cognitive decline. To evaluate the full utility of this diagnostic tool, information is needed on whether results from amyloid-β PET scans influence care-partner outcomes.ObjectiveThis study examines the extent to which previous disclosure of elevated amyloid (suggestive of Alzheimer's disease (AD) etiology) versus not-elevated amyloid (not suggestive of AD etiology) is associated with changes in care-partner wellbeing.MethodsThe study used data derived from a national longitudinal survey of Medicare beneficiaries (n = 921) with mild cognitive impairment (MCI) or dementia and their care-partners. Care-partner wellbeing outcomes included depressive symptoms (PHQ-8), subjective burden (4-item Zarit burden score), and a 3-item measure of loneliness. Change was measured between 4 (Time 1) and 18 (Time 2) months after receiving the scan results. Adjusted linear regression models regressed change (Time 2-Time 1) in each outcome on scan result.ResultsCare-partners were primarily white, non-Hispanic, college-educated, and married to the care recipient. Elevated amyloid was not associated with statistically significant Time 1 differences in outcomes or with statistically significant changes in depressive symptoms 0.22 (-0.18, 0.61), subjective burden 0.36 (-0.01, 0.73), or loneliness 0.15 (-0.01, 0.32) for care-partners from one time point to another.ConclusionGiven advances in AD biomarker testing, future research in more diverse samples is needed to understand the influence of scan results on care-partner wellbeing across populations.
| S-EPMC9749778 | biostudies-literature
Project description:Biomarkers such as amyloid imaging are increasingly used for diagnosis in the early stages of Alzheimer's disease. Very few studies have examined this from the perspective of the patient. To date, there is only limited evidence about how patients experience and value disclosure in an early disease stage.Semistructured interviews were carried out with 38 patients with amnestic mild cognitive impairment as part of an investigator-driven diagnostic trial (EudraCT, 2013-004671-12; registered on 20 June 2014) in which participants could opt to know the binary outcome (positive/negative) result of their amyloid positron emission tomography (PET) scan. Verbatim transcripts of the interviews were evaluated using qualitative content analysis and NVivo 11 software.Eight of 38 patients received a positive amyloid PET scan result, and the remaining 30 patients received a negative amyloid PET scan result. After disclosure of the result to the patients, we interviewed each patient twice: 2 weeks after disclosure and 6 months after disclosure. Patients had difficulties in repeating the exact words used during disclosure of their amyloid PET scan result by the neurologist; yet, they could recall the core message of the result in their own words. Some patients were confused by the terminology of an amyloid-positive/negative test result. At 6 months, two of eight patients with a positive amyloid PET scan result experienced emotional difficulties (sadness, feeling worried). Three of 30 patients with a negative amyloid PET scan result started to doubt whether they had received the correct result. Patients reported that they experienced advantages after the disclosure, such as information about their health status, the possibility of making practical arrangements, medication, enjoying life more, and a positive impact on relationships. They also reported disadvantages following disclosure, such as having emotional difficulties, feeling worried about when their symptoms might worsen, the risk of a more patronizing attitude by relatives, and the possibility of a wrong diagnosis.This exploratory study shows that the majority of patients can accurately recall the information received during disclosure. The experienced advantages and disadvantages reported by our patients depended on the outcome of the result (positive or negative) and the interval of the conducted interview (2 weeks or 6 months after amyloid PET disclosure). Discrepancies were found between patients' expectations according to the interview prior to amyloid PET disclosure (Vanderschaeghe et al. [Neuroethics. 2017;10:281-97]) and their actual experiences after their amyloid PET disclosure.
| S-EPMC5712105 | biostudies-literature
Project description:Sex chromosome trisomies (SCTs) are frequently diagnosed, both prenatally and postnatally, but the highly variable childhood outcomes can leave parents at a loss on whether, when and how to disclose genetic status. In two complementary studies, we detail current parental practices, with a view to informing parents and their clinicians. Study 1 surveyed detailed qualitative data from focus groups of parents and affected young people with either Trisomy X or XYY (N=34 families). These data suggested that decisions to disclose were principally affected by the child's level of cognitive, social and emotional functioning. Parents reported that they were more likely to disclose when a child was experiencing difficulties. In Study 2, standardised data on cognitive, social and emotional outcomes in 126 children with an SCT and 63 sibling controls highlighted results that converged with Study 1: logistic regression analyses revealed that children with the lowest levels of functioning were more likely to know about their SCT than those children functioning at a higher level. These effects were also reflected in the likelihood of parents to disclose to unaffected siblings, schools and general practitioners. In contrast, specific trisomy type and the professional category of the clinician providing the original diagnosis did not affect likelihood of disclosure. Our study emphasises the complex weighing up of costs and benefits that parents engage in when deciding whether to disclose a diagnosis.
| S-EPMC4930078 | biostudies-literature
Project description:BackgroundIn recent years, tensions between IRBs and principal investigators (PIs) have risen, posing the needs to understand these conflicts, their underlying causes, and possible solutions. Researchers frequently complain about IRBs, but how IRBs perceive and respond to these criticisms is unclear.MethodsI conducted in-depth, semi-structured interviews of two hours each with 46 chairs, administrators, and members. I contacted the leadership of 60 IRBs around the country (every fourth one in the list of the top 240 institutions by NIH funding) and interviewed IRB leaders from 34 of these institutions (response rate = 55%).ResultsInterviewees suggest that IRBs and PIs may view the nature and causes of these conflicts very differently and misunderstand each other, exacerbating tensions. Interviewees often recognized that they were seen by PIs as having power, but many IRBs saw themselves as not having it (e.g., because they are "merely following the regulations," and their process is "open," impersonal and unbiased, and they are themselves subject to higher administrative agencies), or as having it, but feeling it is small, and/or justified (e.g., because it is based on overriding goals and "the community values," and IRBs are trying to help PIs). Questions emerge as to whether IRBs do or should have power, and if so, what kind, how much, and when. Several factors may affect these tensions.ConclusionsThis study, the first to explore how IRBs perceive and understand conflicts and power relationships with PIs, suggests how IRBs and PIs may differ in viewing their respective roles and relationships, exacerbating tensions. These issues have critical implications for IRBs and PIs--to enhance their awareness and understanding of these conflicts (e.g., that IRBs may have discretionary power) and the underlying causes involved, and for increasing attention to research, practice, and policy concerning these areas of IRB functioning and interactions with PIs.
| S-EPMC3236766 | biostudies-literature
Project description:Herpes zoster (HZ) is common in older adults with conditions such as chronic obstructive pulmonary disease (COPD). Effective prevention is available through vaccination, but HZ vaccine uptake remains incomplete. Using an online survey of people with self-reported COPD, ShiPPS assessed HZ risk awareness, HZ vaccine use and barriers, and the impact of an HZ educational video on vaccine intent. USA members of the COPD Foundation’s Patient-Powered Research Network aged >50 years were surveyed in fall 2020. The responses were analyzed using descriptive and comparative statistics. Of the 735 respondents (59.6% female, mean age 68.5 years), 192 (26.1%) reported previous HZ, of whom 49 (25.5%) reported increased COPD symptoms during HZ episodes. Most participants (94.0%) knew of HZ vaccines, but only 33.1% reported receiving the Advisory Committee on Immunization Practices-preferred recombinant HZ vaccination. The recall of receiving HZ vaccine recommendations differed by the site attended: 68.8% primary care, 26.6% pulmonology offices. Most (74.7%) were unaware that COPD increases HZ risk. Among unvaccinated participants, interest in getting the HZ vaccine increased from 32.0% to 73.5% after watching the video. These results highlight the need for people with COPD to receive further HZ education, such as the five-minute video, and HZ vaccine recommendations from healthcare professionals.
| S-EPMC8951084 | biostudies-literature
Project description:Pregnant Hispanic women are underserved with their needs for genetic counseling, despite birth defects remaining the leading cause of infant death in the United States. We present the qualitative findings of a study to understand knowledge and perceptions of prenatal testing in a sample of hard-to-reach underrepresented Hispanic pregnant women in South Texas. The sample for this study was 10 Hispanic pregnant women who were recruited from a high-risk prenatal clinic in South Texas in 2019. The semi-structured interview questions were created based on the researchers' clinical experiences with this population and were designed to examine knowledge and perceptions of participants toward prenatal testing. Analysis of the qualitative data yielded several themes related to prenatal testing: (a) knowledge, (b) confusion, (c) partner's and support persons' opinions, (d) information sharing from providers, (e) psychological benefits, (f) preparation for baby, (g) obstacles, (h) religious influence, and (i) educational tools to assist with understanding. Women's understanding and knowledge of prenatal testing was limited, specifically regarding its purpose, how it works, the benefits, and why it was recommended by their provider. Lack of clarity about why they should take the test and its risks for them and their babies was perceived as something that could impede their acceptance of prenatal testing. All participants agreed that healthcare providers should share more information about prenatal testing in a way that uses 'everyday language' so that they can understand it better. All respondents mentioned that prenatal testing provides information about their baby's health conditions, alleviates their stress and concerns, and psychologically prepares them and their family for what is to come. Identifying ways to increase culturally appropriate education delivered by genetic counselors such as through the adoption of telemedicine and mobile technology can help fill the gap for this underserved population.
| S-EPMC8248231 | biostudies-literature
Project description:ObjectiveTo assess the knowledge, opinions and expectations of persons with and without obesity concerning personalised genotype-based nutrition.DesignQuestions about nutrition, weight management and personalised genotype-based dietary recommendations were asked via standardised telephone-based interviews. Sociodemographic and anthropometric data were collected. The data were statistically weighted by age, gender, education, domicile and BMI.SettingGermany.ParticipantsRepresentative sample of the German population (n 1003) randomly sampled via a scientific Random Digit dial method plus 354 adults with a BMI ≥ 30·0 kg/m2 to enlarge the sample.ResultsData of 1357 participants were analysed (51·1 % female, age: 50·5 ± 18·5 years, 15·9 % adults with a BMI ≥ 30·0 kg/m2). About 42 % or 19 % of the survey participants stated to know the terms personalised dietary recommendation or genotype-based dietary recommendation, respectively. Of those, 15·8 % indicated to have an experience with a personalised or genotype-based dietary recommendation. Almost 70 % of the survey participants believed that a genotype-based dietary recommendation is a reasonable measure for weight management. About 55 % of the survey participants pointed out that a genotype-based dietary recommendation is an effective concept in general. One-third of the survey participants (34·6 %) indicated to conceive the usage of a genotype-based dietary recommendation.ConclusionMost of the survey participants did not know the term personalised or genotype-based dietary recommendation. One-third of the study participants are interested to use a genotype-based dietary recommendation. Therefore, more education of the public is necessary to properly help people making informed and serious decisions and assessing commercially available direct-to-consumer genetic tests.
| S-EPMC8094433 | biostudies-literature
Project description:Understanding the knowledge, attitudes and practices of physicians towards antibiotic resistance is key to developing interventions aimed at behavior change. The survey aimed to investigate physicians' knowledge and attitudes towards antibiotic resistance in a tertiary-care hospital setting in Ghana.We conducted a cross-sectional respondent-driven survey using a 40-item, anonymous, voluntary, traditional paper-and-pencil self-administered questionnaire among 159 physicians at Korle-Bu Teaching Hospital. Single and multi-factor analysis were conducted to assess the study objectives.The survey was completed by 159 of 200 physicians (response rate of 79.5%). Of physicians, 30.1% (47/156) perceived antibiotic resistance as very important global problem, 18.5% (29/157) perceived it as very important national problem and only 8.9% (14/157) thought it as a very important problem in their hospital. Methicillin resistant Staphylococcus aureus was the most known about antibiotic resistant bacteria of public health importance followed by extended-spectrum beta-lactamase-producing Enterobacteriaceae, carbapenem resistant Enterobacteriaceae (CRE) and vancomycin resistant enterococci (VRE). In multiple logistic regression analysis, senior physicians were nearly 3 times more likely to know about CRE than junior physicians. The odds of knowing about VRE increased over 4.5 times from being a junior to becoming senior physician. Among junior physicians, age had no associated effect on their knowledge of VRE or CRE.Physicians in this survey showed variable knowledge and perceptions on antibiotic resistance. Introducing educational programs on antibiotic resistance would be a useful intervention and should focus on junior physicians.
| S-EPMC5819203 | biostudies-literature
Project description:BackgroundHypertensive disorders of pregnancy (HDP) affect 5-10% of pregnant women. Women after HDP have 2-3 times increased risk of heart attack, stroke and diabetes, as soon as 5-10 years after pregnancy. Australian healthcare providers' knowledge of cardiovascular disease (CVD) risks for women after HDP is unknown, and this study aimed to explore their current knowledge and practice regarding long-term cardiovascular health after HDP, as a precursor to producing targeted healthcare provider education on health after HDP.MethodsA custom-created, face-validated online survey explored knowledge about long-term risks after HDP. Distribution occurred from February to July 2019 via professional colleges, key organisations and social media. The objective was to assess current knowledge and knowledge gaps amongst a group of healthcare providers (HCP) in Australia, regarding long-term cardiovascular health after hypertensive disorders of pregnancy (HDP), specifically gestational hypertension or preeclampsia.ResultsOf 492 respondents, 203 were midwives, 188 obstetricians, 75 general practitioners (GP), and 26 cardiologists. A risk knowledge score was computed with 0-6 considered low, 6.1-8.9 moderate and 9-12 high. Most participants (85%) were aware of increased cardiovascular disease after preeclampsia and gestational hypertension (range 76% midwives to 100% cardiologists). There were significant differences in average knowledge scores regarding health after preeclampsia; high for cardiologists (9.3), moderate for GPs and obstetricians (8.2 and 7.6 respectively) and low for midwives (5.9). Average knowledge scores were somewhat lower for gestational hypertension (9.0 for cardiologists, 7.4 for obstetricians and GPs, 5.1 for midwives). Knowledge was highest regarding risk of chronic hypertension, moderate to high regarding risk of ischaemic heart disease, stroke and recurring HDP, and low for diabetes and peripheral vascular disease. Only 34% were aware that risks start < 10 years after the affected pregnancy.Conclusion(s)Participants were aware there is increased cardiovascular risk after HDP, although less aware of risks after gestational hypertension and some specific risks including diabetes. Findings will inform the development of targeted education.
| S-EPMC7684922 | biostudies-literature