Issues Affecting Minority Participation in Research Studies of Alzheimer Disease

Welsh, Kathleen A.; Ballard, Edna L.; Nash, Florence; Raiford, Kate; Harrell, Lindy E.

doi:10.1097/00002093-199424003-00005

Cited by 17 publications

(29 citation statements)

References 0 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…34 Strategies such as improving community awareness about AD, addressing practical considerations such as accessibility of the research setting, and involving community leaders in planning and execution of research can help to boost minority participation in dementia studies. 87 Such strategies need to be implemented more frequently if research in- Fig. 2.…”

Section: Discussionmentioning

confidence: 99%

Incorporating ethnicity into genetic risk assessment for Alzheimer disease: the REVEAL study experience

Christensen

Roberts

Royal

et al. 2008

Genetics in Medicine

View full text Add to dashboard Cite

Purpose: To describe how investigators in a multisite randomized clinical trial addressed scientific and ethical issues involved in creating risk models based on genetic testing for African American participants. Methods: The following informed our decision whether to stratify risk assessment by ethnicity: evaluation of epidemiological data, appraisal of benefits and risks of incorporating ethnicity into calculations, and feasibility of creating ethnicityspecific risk curves. Once the decision was made, risk curves were created based on data from a large, diverse study of first-degree relatives of patients with Alzheimer disease. Results: Review of epidemiological data suggested notable differences in risk between African Americans and whites and that Apolipoprotein E genotype predicts risk in both groups. Discussions about the benefits and risks of stratified risk assessments reached consensus that estimates based on data from whites should not preclude enrolling African Americans, but population-specific risk curves should be created if feasible. Risk models specific to ethnicity, gender, and Apolipoprotein E genotype were subsequently developed for the randomized clinical trial that oversampled African Researchers are identifying a growing number of genetic markers that are associated with increased or decreased risk for common, complex diseases. Consequently, the development of genetic risk assessment and risk communication strategies are areas of critical importance, especially given that laypersons often have a difficult time in understanding probabilistic information. 1,2 Protocols for disclosing genetic information have been developed and refined for various forms of cancer, 3-6 but similar efforts have been made only recently for other diseases. 7,8 One area of recent focus is Alzheimer disease (AD).AD is the most common form of dementia among the elderly, affecting an estimated five million individuals in the United States. Well over 10 million Americans are expected to have the condition by 2050 as the population continues to age. 9 Many risk factors are well-characterized, including age and family history, 10 -14 whereas many others are under investigation, including education level, 15,16 head trauma, 17,18 high blood pressure, 19 caloric intake, and high cholesterol. 20,21 Regarding genetic factors, rare mutations on genes coding for amyloid precursor protein, presenilin 1, and presenilin 2 have been identified that are deterministic for early-onset AD. 22 Apolipoprotein E (APOE), in contrast, affects susceptibility to AD and has three major forms. APOE ⑀3, the most common allele, is found in over half the US population. The ⑀4 allele is associated with increased risk for AD whereas the ⑀2 allele has a protective effect. 23,24 The ⑀4 allele is neither necessary nor sufficient for AD though, and individuals with the ⑀2 allele still have risk for AD. APOE variants are also associated with other conditions such as hyperlipoproteinemia and atherosclerosis 25 and may play a role in the development of ma...

show abstract

Section: Discussionmentioning

confidence: 99%

Incorporating ethnicity into genetic risk assessment for Alzheimer disease: the REVEAL study experience

Christensen

Roberts

Royal

et al. 2008

Genetics in Medicine

View full text Add to dashboard Cite

show abstract

“…For example, studies in the cancer and hypertension literature have found that African Americans had less knowledge than whites about risk factors, symptoms, causes, detection, and treatment (Michielutte and Diseker, 1982;Kumanyika et al, 1989). For many reasons (e.g., economic barriers, institutional racism, mistrust of the medical system), African Americans have been less likely to use geriatric services and to participate in research on Alzheimer disease (Welsh et al, 1994;Connell et al, 2001). They may have less access to the health care system for AD and, as a result, less formal knowledge about the disorder.…”

Section: Discussionmentioning

confidence: 99%

Differences Between African Americans and Whites in Their Perceptions of Alzheimer Disease

Roberts¹,

Connell²,

Cisewski³

et al. 2003

Alzheimer Disease & Associated Disorders

134

107

View full text Add to dashboard Cite

Summary:To design optimal health services and education programs for Alzheimer disease (AD), it is important to understand cultural differences in perceptions of the disorder. In this study, we investigated differences between African Americans and whites in their beliefs, knowledge, and information sources regarding AD. We distributed a written questionnaire through lay and professional organizations and meetings in the southeastern United States, yielding a sample of 452 adults (61% white, 39% African American; 78% female; mean age 47 years; 33% with family history of AD). The questionnaire assessed the following: (1) illness beliefs, (2) factual knowledge, (3) sources of information, and (4) perceived subjective threat of AD. African Americans and whites were generally similar in their beliefs about common symptoms, prominent risk factors, and the effectiveness of treatments for AD (although whites expressed greater certainty in these beliefs than African Americans). In comparison to whites, African Americans showed less awareness of facts about AD, reported fewer sources of information, and indicated less perceived threat of the disorder. These preliminary findings suggest important distinctions between African Americans and whites in their knowledge about, and conceptualization of, AD. Follow-up studies with more representative samples and more fully validated measures will be necessary to confirm these differences. Health psychologic research suggests that such differences in illness perceptions could shape response to disease burden, assessment and diagnosis, and available health care options.

show abstract

“…This is only something that we can speculate about; however, generally speaking, unless otherwise specified, most African Americans will assume that the researchers are White because it matches their perceptions or experiences about the nature of data collection efforts. Researchers (Gibson & Abram, 2003;Smith et al, 2007;Tillman, 2006;Welsh et al, 1994) have noted the importance of recruiting more African American researchers into the field to provide African American participants with the visible comfort of having members of the research team who are ra-cially similar. However, other research (e.g., Thompson et al, 1996) suggests that race or ethnicity of the researchers has no impact on African American research participation, as long as participants are treated with dignity and respect (Huang & Coker, in press;Kerkorian et al, 2007).…”

Section: Issues Challenges and Mistakes Made In Participant Recruitmentioning

confidence: 99%

“…Mason stated that the terminology of many consent documents may be too technical for many laypeople to understand, which could further increase a potential participant's sense of intimidation and contribute to cultural distrust. With respect to age of participants, Welsh, Ballard, Nash, Raiford, and Harrell (1994) suggested that illiteracy could also be a barrier to participation when conducting research with older African Americans.…”

mentioning

confidence: 99%

Research With African Americans: Lessons Learned About Recruiting African American Women

Coker

Huang

Kashubeck‐West

2009

J Multicult Couns & Deve

View full text Add to dashboard Cite

the authors briefly explore literature related to recruiting african american research participants, reflect on their experiences conducting body image research with a sample of african american college women in an earlier study (s. Kashubeck-West et al., 2008), and discuss some methodological and cultural challenges that they encountered during data collection for the study.los autores exploran brevemente la literatura relacionada con el reclutamiento de individuos afroamericanos para participar en estudios de investigación, reflexionan sobre sus experiencias al llevar a cabo estudios sobre imagen corporal con una muestra de mujeres afroamericanas universitarias en un estudio anterior (s. Kashubeck-West et al., 2008) y por último discuten algunos de los desafíos metodológicos y culturales con los que tuvieron que enfrentarse durante la recopilación de datos para el estudio.

show abstract

Issues Affecting Minority Participation in Research Studies of Alzheimer Disease

Cited by 17 publications

References 0 publications

Incorporating ethnicity into genetic risk assessment for Alzheimer disease: the REVEAL study experience

Incorporating ethnicity into genetic risk assessment for Alzheimer disease: the REVEAL study experience

Differences Between African Americans and Whites in Their Perceptions of Alzheimer Disease

Research With African Americans: Lessons Learned About Recruiting African American Women

Contact Info

Product

Resources

About