Recruitment of Chinese American Elders into Dementia Research: The UCSF ADRC Experience

Chao, Steven; Lai, Ngan Betty; Tse, Marian; Ho, Rachel; Kong, Joanne; Matthews, Brandy R.; Miller, Bruce L.; Rosen, Howard J.

doi:10.1093/geront/gnr033

Cited by 35 publications

(72 citation statements)

References 21 publications

(19 reference statements)

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“…Unlike our study, Davis et al (2002) found that the implementation of multiple follow-up strategies was the most important factor in achieving high retention rates regardless of the population being studied. Our findings that relationships, including elements of trust, cultural competence, and participants’ wariness of financial conflicts of interest, are crucial to participant retention are consistent with previous studies that found these to be important factors in peoples’ willingness to enroll in research (Chao et al, 2011; Dilworth-Anderson, 2011; Kirkby, Calvert, Draper, Keeley, & Wilson, 2012; Manson, Garroutte, Goins, & Henderson, 2004). A focus group study with African American research participants found that a lack of trust in scientific research, academic institutions, and researchers themselves, as well as the failure of researchers to share their findings with the community, were participation barriers regardless of SES or education (Williams et al, 2010).…”

Section: Discussionsupporting

confidence: 91%

Retaining Participants in Outpatient and Community-Based Health Studies

Odierna

Bero

2014

SAGE Open

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Loss to follow-up can introduce bias into research, making it difficult to develop inclusive evidence-based health policies and practice guidelines. We aimed to deepen understanding of reasons why participants leave or remain in longitudinal health studies. We interviewed 59 researchers and current and former research participants in six focus groups (n = 55) or interviews (n = 4) at three study centers in a large academic research institution. We used minimally structured interview guides and inductive thematic analysis to explore participant-level, study-level, and contextual participation barriers and facilitators. Four main themes emerged: transportation, incentives and motivation, caregiver concerns, and the social and physical environment. Themes shared crosscutting issues involving funding, flexibility, and relationships between researchers and research participants. Study-level and contextual factors appear to interact with participant characteristics, particularly socioeconomic status and disease severity to affect participant retention. Participants’ characteristics do not seem to be the main cause of study dropout. Researchers and funders might be able to address contextual and study factors in ways that reduce barriers to participation.

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Section: Discussionsupporting

confidence: 91%

Retaining Participants in Outpatient and Community-Based Health Studies

Odierna

Bero

2014

SAGE Open

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“…27,31-34 Overcoming barriers, such as lack of awareness or understanding about research and historical mistrust of the research community, requires a sustained effort. Yet researchers are typically funded on a trial-by-trial basis and may not have the resources needed to build sustained relationships and infrastructure with the community.…”

Section: Awareness Outreach Building Trustmentioning

confidence: 99%

Obstacles And Opportunities In Alzheimer’s Clinical Trial Recruitment

et al. 2014

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The 2012 National Plan to Address Alzheimer’s Disease set an ambitious goal: to both prevent and effectively treat Alzheimer’s disease by 2025. To reach this goal, tens of thousands of volunteers will be needed to participate in clinical trials to test promising new interventions and therapies. To mobilize these volunteers and their health care providers to participate in future clinical trials, it will be necessary to achieve a better understanding of the barriers keeping people from participating in Alzheimer’s research; form innovative partnerships among researchers, health care and social service providers, and the public; and develop more-effective outreach strategies. In this article we explore recruitment issues, including those unique to Alzheimer’s studies, and we suggest concrete steps such as establishing a structured consortium linking all of the registries of Alzheimer’s trials and establishing new partnerships with community and local organizations that can build trust and understanding among patients, caregivers, and providers.

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“…As part of its outreach efforts, the UCSF MAC maintains two outreach clinic sites in San Francisco’s Chinatown where Chinese-speaking patients can be referred for cognitive evaluation (16). In addition, patients from the regular MAC cognitive assessment clinic at UCSF are recruited into the ADRC, and some patients are self-referred or referred by other practitioners directly into our research studies.…”

Section: Methodsmentioning

confidence: 99%

Depressive Symptoms in Chinese-American Subjects with Cognitive Impairment

Chao

Matthews

Yokoyama

et al. 2014

The American Journal of Geriatric Psychiatry

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Objectives To assess the prevalence of geriatric depression in Chinese American patients with cognitive impairment and to compare the prevalence to that of cognitively normal elderly Chinese Americans and Caucasians. Design We compared rates of depressive symptomatology in elderly Chinese Americans to a matched group of Caucasians, with and without dementia, and assessed rates of treatment for depression across all groups. Setting Academic subspecialty referral clinic. Participants Participants included a total of 137 elderly, cognitively impaired and cognitively normal Chinese Americans and 140 Caucasians with and without cognitive impairment. Measurements Demographic (e.g. age, education, race, language ability), cognitive (MMSE score), medical (e.g. cardiovascular morbidity) and functional (Clinical Dementia Rating Scale) risk factors were assessed for association with depressive symptomatology as measured by the Geriatric Depression Scale (GDS). Results Depression (GDS score ≥ 6 out of 15) was significantly more common in cognitively impaired Chinese Americans (35%) versus cognitively impaired Caucasians (15%, χ2 = 33.8, p<0.05), and Chinese Americans were less likely to be on treatment for depression (12%) than Caucasians (37%, χ2 = 41, p<0.05). Cognitive and functional impairment, age and education were all independent predictors of GDS score. Rates of depression were not significantly different in cognitively normal Chinese American (6%) and Caucasian (0%) groups. Conclusions These findings indicate that elderly Chinese Americans with cognitive impairment are at significantly increased risk for unrecognized depression and that education, and/or other cultural factors associated with education may contribute to this risk.

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Recruitment of Chinese American Elders into Dementia Research: The UCSF ADRC Experience

Cited by 35 publications

References 21 publications

Retaining Participants in Outpatient and Community-Based Health Studies

Retaining Participants in Outpatient and Community-Based Health Studies

Obstacles And Opportunities In Alzheimer’s Clinical Trial Recruitment

Depressive Symptoms in Chinese-American Subjects with Cognitive Impairment

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