An intervention to enhance Alzheimer's disease clinical research participation among older African Americans.

BACKGROUND: Alzheimer's disease (AD) rates are higher among African Americans than in other racial or ethnic groups. However, Black elders participate in research at lower rates than Whites. OBJECTIVE: The present study aimed to: (1) implement an informational protocol for African Americans elders and their loved ones about the benefits of clinical research and brain donation program participation in AD, and (2) quantitatively assess changes in knowledge, attitudes, and trust. METHODS: Participants included 52 African American participants from the Boston University Alzheimer's Disease Center research registry (74 ± 8 years, 83% female) and 11 loved ones. Registry participants completed a pre- and post-group survey assessing brain donation knowledge, factors influencing brain donation, attitudes about medical research, and trust in medical researchers. RESULTS: There were no significant changes in mean scores between the pre- and post-group surveys. However, post-group outcomes revealed that 69% of participants shared details from the protocol with loved ones, 27% expressed an interest in joining Center-sponsored studies, and 10% indicated an interest in changing their brain donation status. CONCLUSION: The informational protocol implemented in this study is an effective method to encourage family discussions about brain donation and increase interest in other AD research studies. Longitudinal follow-up is necessary to assess the long-term implications of these groups on participation in a brain donation program.

Clinical research risk assessment among individuals with mild cognitive impairment.

OBJECTIVE: : To determine whether individuals with mild cognitive impairment (MCI) differ from cognitively normal (NC) elders on a risk assessment task and whether participants and their study partners evaluate risk and benefit similarly. DESIGN: : Cross-sectional. SETTING: : University medical setting. PARTICIPANTS: : Seventy-nine participants (NC, n = 40; MCI, n = 39), age 60-90 years (73 ± 7 years; 53% women), and 64 study partners (NC, n = 36; MCI, n = 28), age 38-84 years (68 ± 10 years; 67% women). MEASUREMENTS: : Participants and study partners completed a risk assessment task that involved ranking from least to most risk four hypothetical vignettes for memory loss research (brain autopsy, blood draw, oral medication, neurosurgery). Participants also completed decisional capacity for research and neuropsychological protocols. RESULTS: : MCI participants' risk rankings differed from NC risk rankings (p <0.001) with MCI participants ranking brain autopsy higher and an oral medication trial lower. Demographic, decisional capacity, and neuropsychological variables could not explain MCI participant performances. Participants and their study partners had comparable risk assessment performance (p = 1.0). MCI study partners performed similar to their MCI participant counterparts but were different from NC study partners (p = 0.002; i.e., ranking autopsy higher and oral medication lower). CONCLUSION: : Findings suggest that individuals with MCI assess risk differently than NC peers by overestimating the risk (or underestimating the benefit) of brain autopsy and underestimating the risk (or overestimating the benefit) of oral medication. Study partners display a similar pattern. These observations may be secondary to MCI participants' (and their study partners') personal connection to the potential benefits of an experimental medication for memory loss.

Virtualizing intimacy: information communication technologies and transnational families in therapy.

Information communication technologies (ICTs) are a ubiquitous feature of immigrant family life. Affordable, widely accessible, and highly adaptable ICTs have transformed the immigrant experience into a transnational process with family networks redesigned but not lost. Being a transnational family is not a new phenomenon. Transnationalism, however, has historically been reserved for the wealthier professional and political immigrant class who were able to freely travel and use expensive forms of communication before the emergence of accessible technologies. This paper systematically reviews the research literature to investigate the potential impact of ICTs on the lives of transnational families and how these families utilize them. The wide penetration of ICTs also puts into question some of the ways in which scholars have conceptualized the immigrant experience. The appropriate use of technology in family therapy should strengthen culturally competent and equity-based approaches to address the needs of these families. A family therapy with a transnational family illuminates some of the potential that these technologies introduce in the practice of relational clinicians.

Factors associated with African American and White elders' participation in a brain donation program.

This study examined factors associated with brain donation program participation among African American and White elders. By postal mail, participants were recruited from an Alzheimer's research registry (all of whom had been invited to participate in the Center's brain donation program) and asked to complete surveys assessing brain donation knowledge, trust in healthcare systems, and religiousness. African American respondents completed a cultural mistrust inventory. Demographic, brain donation status, and literacy data (as assessed by the Wide Range Achievement Test-3 Reading subtest) were compiled from the respondents' most recent registry visit. The survey response rate was 60% (n=184 White and n=49 Black respondents). Logistic regression, comparing religiousness, trust in healthcare institutions, and educational attainment, identified a single predictor (ie, religiousness) in the prediction of donation status among White respondents (P=0.008), whereas no predictors were observed for donation status among the Black respondents. Using all African American donors and nondonors from the registry (n=68), comparisons revealed Wide Range Achievement Test-3 Reading score differences for African American donors (46.8±5.9) and nondonors (42.8±8.4, P=0.02). Results suggest that increased religiousness is related to White elders' decisions not to donate, whereas lower reading ability might be related to African American participants' decisions not to donate.

Perceptions, knowledge, incentives, and barriers of brain donation among African American elders enrolled in an Alzheimer's research program.

PURPOSE: To learn about African American older adults' knowledge and perceptions of brain donation, factors that relate to participating or not participating in a brain donation research program, and methods to increase African American brain donation commitment rates in the context of an Alzheimer's disease (AD) research program. DESIGN AND METHODS: African American older adults (n = 15) from the Boston University Alzheimer's Disease Core Center participant research registry enrolled in 1 of 2 focus groups of 90 min about brain donation. Seven participants were selected for a third follow-up focus group. RESULTS: Focus group transcripts were analyzed using consensual qualitative research methods, and 8 overarching themes emerged: (a) perceptions of and misconceptions about brain donation procedures, (b) racial minorities in medical research, (c) racial disparities and discrimination in medical settings, (d) influence of religion and spirituality, (e) family perceptions of and involvement in donation, (f) family history of disease and desire to find a cure, (g) prior exposure to medical and research settings, and (h) culturally sensitive approaches to brain donation. IMPLICATIONS: Culturally relevant educational protocols need to be created for use with African American older adults. These protocols should include information about brain donation procedures, rates of AD among Black elders, and potential benefits of donation to Black communities; inclusion of religious figures, family, and peers in donation education and decisions; and methods to address mistrust, including cultural competence trainings for staff.

Clinical research participation among aging adults enrolled in an Alzheimer's Disease Center research registry.

In light of our limited understanding of what motivates older adults to participate in clinical studies of Alzheimer's disease (AD), the current study examines incentives and barriers to participating in AD clinical research among older adults. 235 participants enrolled in the Boston University Alzheimer's Disease Center research registry (75 ± 8 years, range 58-99 years, 60% female), a longitudinal registry from which individuals are recruited into other clinical studies, completed a survey assessing registry participation satisfaction, religiousness, trust in healthcare institutions, and medical research attitudes. Most participants reported initially enrolling in the registry for societal benefit. Insufficient time was a commonly endorsed barrier to enrolling in other Center-approved studies, particularly among younger participants. Driving and a lack of transportation to the medical facility were also barriers, particularly for older participants. Transportation was the most popular incentive, followed by home-based visits (particularly for older participants and participants with less formal education) and compensation (particularly among respondents from racial/ethnic minority groups). Participation interest in other studies was associated with favorable medical research attitudes (r = 0.34, p = 0.00003) but not religiousness (r = -0.09, p = 0.21), or trust in healthcare institutions (r = 0.09, p = 0.17). Among older adults, societal benefit is a motivating factor for registry enrollment; however, participation in additional studies is hindered by insufficient time among younger participants and transportation barriers among older participants. Providing transportation, home-based visits, and modest compensation may improve participation rates. Furthermore, favorable attitudes toward medical research are strongly associated with interest in enrolling in additional studies and may serve as a beneficial outreach triage technique.

Decisional capacity for research participation in individuals with mild cognitive impairment.

OBJECTIVES: To assess decisional capacity performance and the neuropsychological correlates of such performance to better understand higher-level instrumental activities of daily living in individuals with mild cognitive impairment (MCI). DESIGN: Cross-sectional. SETTING: Research center, medical center, or patient's home. PARTICIPANTS: Forty participants with MCI and 40 cognitively normal older controls (NCs) aged 60 to 90 (mean age+/-standard deviation 73.3+/-6.6; 54% female). MEASUREMENTS: Capacity to provide informed consent for a hypothetical, but ecologically valid, clinical trial was assessed using the MacArthur Competence Assessment Tool for Clinical Research. Neuropsychological functioning was assessed using a comprehensive protocol. RESULTS: Adjusted between-group comparisons yielded significant differences for most decisional capacity indices examined, including Understanding (P=.001; NC>MCI) and Reasoning (P=.002; NC>MCI). Post hoc analyses revealed that participants with MCI who were categorized as capable of providing informed consent according to expert raters had higher levels of education than those who were categorized as incapable. CONCLUSION: The findings suggest that many individuals with MCI perform differently on a measure of decisional capacity than their NC peers and that participants with MCI who are incapable of providing informed consent on a hypothetical and complex clinical trial are less educated. These findings are consistent with prior studies documenting functional and financial skill difficulties in individuals with MCI.

Characterization of activities of daily living in individuals with mild cognitive impairment.

OBJECTIVE: To determine whether participants with mild cognitive impairment (MCI) differ from cognitively normal (NC) older adults on traditional and novel informant-based measures of activities of daily living (ADL) and to identify cognitive correlates of ADLs among participants with MCI. DESIGN: Cross-sectional. SETTING: University medical setting. PARTICIPANTS: Seventy-seven participants (NC: N = 39; MCI: N = 38), 60 to 90 years old (73.5 +/- 6.6 years; 53% female). MEASUREMENTS: Neuropsychological and ADL measures. METHODS: Neuropsychological tests were administered to NC and MCI participants. Informants completed the Lawton and Brody Instrumental Activities of Daily Living and Physical Self-Maintenance Scale, including instrumental (IADL) and basic ADL (BADL) scales, as well as the Functional Capacities for Activities of Daily Living (FC-ADL), an error-based ADL measure. RESULTS: No statistically or clinically significant between-group differences emerged for the BADL or IADL subscales. However, a robust difference was noted for the FC-ADL scale (MCI errors > NC errors; F((1,75))= 13.6, p <0.001; d = 0.84). Among MCI participants, correlations revealed that a measure of verbal learning was the only neuropsychological correlate of FC-ADL total score (r = -0.39, df = 36, p = 0.007). No neuropsychological measures were significantly associated with the IADL or BADL subscale score. CONCLUSION: Traditional measures assessing global ADLs may not be sensitive to early functional changes related to MCI; however, error-based measures may capture the subtle evolving functional decline associated with MCI. Among MCI participants, early functional difficulties are associated with verbal learning performance, possibly secondary to the hallmark cognitive impairment associated with this cohort.

Predictors of on-call specialist response times in California emergency departments.

OBJECTIVES: To assess waiting times in emergency departments (EDs) for on-call specialist response and how these might vary by facility or neighborhood characteristics. Limited availability of on-call specialists is thought to contribute to ED overcrowding. METHODS: Direct observational data from a random sample of 1,798 patients visiting 30 California EDs during a six-month period provided specialist waiting times. The authors used multivariate logistic regression and survival analysis to analyze predictors of time to on-call specialists' telephone response. RESULTS: Eighty-six percent of on-call specialists who were paged responded by telephone within 30 minutes. Ten percent of specialists did not respond at all. After controlling for the annual percentage of nonurgent ED patients at each facility, near closure status, and hospital ownership status, for every 10,000 dollars increase in hospital zip code income, the odds of on-call specialist response within 30 minutes increased by 123% (adjusted odds ratio = 2.23; 95% confidence interval = 1.24 to 4.02; p = 0.01). CONCLUSIONS: Although the majority of on-call specialists met the federal recommendation of a 30-minute response, those in poor neighborhoods were less likely to do so. One in ten on-call specialists did not respond at all. State and federal policies should focus on making more funding available for on-call specialist panels in poor areas.

Waiting times in California's emergency departments.

STUDY OBJECTIVE: Many perceive emergency department crowding as a significant problem that is getting worse. A national survey of ED directors defined crowding, in part, as waiting more than 1 hour to see a physician, a wait considered likely to result in adverse outcomes. Yet few data are available on ED waiting times among a heterogeneous group of hospitals serving a distinct geographic region. METHODS: We observed a random sample of 1,798 patients visiting 30 California EDs between December 15, 2000, and May 15, 2001. We defined waiting time as the interval from ED arrival to first contact with a physician or midlevel provider. RESULTS: Patients waited an average of 56 minutes (95% confidence interval [CI] 52 to 61 minutes; median 38 minutes); 42% waited longer than 60 minutes. Ordinary least squares regression analysis revealed that waiting times were significantly longer at hospitals in poorer neighborhoods: For every 10,000 dollars decline in per capita income, patients waited 10.1 minutes longer (95% CI 1.8 to 18.4 minutes; P=.02) after adjusting for hospital ownership, teaching status, trauma status, proximity to a recently closed ED, ED volume, patient severity, and age. Lower ratios of physicians and triage nurses to waiting room patient were also associated with longer waits. CONCLUSION: Waiting times often exceeded the threshold set by a survey of ED directors. Further study is required to examine factors that lead to longer waiting times at hospitals in low-income areas. Physician and nurse staffing should be investigated as a means of reducing waiting times.

Trends in the use and capacity of California's emergency departments, 1990-1999.

STUDY OBJECTIVE: Concerns over the ability of the nation's emergency departments to meet current demands are growing among the public and health care professionals. Data supporting perceptions of inadequate capacity are sparse and conflicting. We describe changes in the use and capacity of California's EDs between 1990 and 1999, as well as trends in severity of patient illness or injury. METHODS: Data from California's Office of Statewide Health Planning and Development (OSHPD), which describe all hospital and health service use in the state, were analyzed and later verified using a telephone survey of all 320 open EDs in California. Six variables were analyzed: hospital's ownership type (public or private), total number of annual ED visits, severity of patient illness or injury (percentage of visits categorized as critical, urgent, or nonurgent), number of ED beds, proximity to a closed ED, and teaching status. We tested 2 main hypotheses: (1) Have statewide ED visits, ED beds, visits per ED, and visits per bed increased or decreased between 1990 and 1999? and (2) Has severity of patient illness or injury, as reported to OSHPD, changed over the past decade? State level data were analyzed using ordinary least-squares regression. Hospital level data were analyzed using repeated measures analyses. RESULTS: The number of EDs in California decreased by 12% (P <.0001). The number of ED treatment stations (ie, physical spaces for the treatment of patients) increased by 687 (16%) statewide (P =.0001), or an average of 79 beds per year. The average annual change in ED visits was not statistically significant (P =.5), whereas visits per ED increased by 27% for all EDs (P <.0001), although with differing trends noted at public and private hospitals. At private hospitals, the average increase was 512 visits/ED each year, whereas at public hospitals, visits decreased by an average of 1,085 visits/ED each year (P <.0001). Overall, critical visits per ED increased by 59% (P <.0001), and nonurgent visits per ED decreased by 8% (P <.0001). CONCLUSION: The number of EDs in California decreased significantly during the 1990s, whereas the number of ED beds increased. Increases in visits per ED, beds per ED, and in the proportion of patients categorized as critical may help explain the perception that ED capacity is inadequate to meet growing demand.