Donald Musa

Public Attitudes Regarding Willingness to Participate in Medical Research Studies

Abstract The recruitment of adequate numbers of people to participate in medical research studies is an ongoing problem for biomedical researchers. Although the general public has come to expect and demand that the biomedical community develop new, safe and effective approaches to the prevention and treatment of diseases, that same public is not aware of the important role that public participation plays in the development of medical advances. Much is known about willingness to participate in research studies from the perspectives of patients, survivors, and those at-risk for getting a particular disease. However, little is known about the attitudes and willingness of the general public to participate in medical research. Yet, it is this population that comprises the potential pool of participants for future treatment and prevention studies. In order to examine public attitudes toward and support for medical research, a random digit dial telephone survey was conducted with 489 persons in southwestern Pennsylvania. The survey measured the respondents stated willingness to take part in a medical research study and the factors associated with willingness to participate. These included the respondents health status, demographic characteristics, attitudes and beliefs about participation and their knowledge about the conduct of medical research. The results of the study indicate that 46% of those surveyed said that they would be willing to take part in a medical research study focusing on a new treatment for a specific disease that was of concern to them, 25% stated that they would not be willing and 29% stated that they were undecided regarding participation. However, under certain circumstances, such as having cancer, over half of those who were undecided said they would be willing to participate. The characteristics of those willing to participate in a medical research study differ from those not willing. Determinants of willingness include: having a relative or friend who has an illness, being middle aged (between 35-64 years old), prior experience with participation in a medical research study, having a favorable attitude toward the use of human subjects in medical research and beliefs that diverse types of persons participate in clinical trials. Those respondents who were undecided about joining a clinical trial, also have different characteristics than those who are not willing. The determinants of being undecided in contrast to not willing include: having at least a college degree, having a favorable or neutral attitude toward the use of humans in medical research and, believing that the well-being of participants is the primary concern of researchers. The findings of this study have both public policy and practice implications. From a policy perspective, medical research designed to develop new treatments for disease requires an evidenced-based approach for decision making. Such an approach can only succeed if adequate numbers of individuals are willing to participate in these studies. From a practice perspective, the current study suggests that opportunities exist to increase participation by targeting recruitment efforts not only toward the willing but also toward those who are undecided about participation in medical research studies. This would involve tailoring the content of communications to meet the specific characteristics and concerns of each of these two groups of individuals.

Evaluation of outpatient geriatric assessment: a randomized multi-site trial.

OBJECTIVE: To evaluate the process and outcome of outpatient consultative geriatric assessment compared with traditional community care.

Recruiting older adults for clinical trials.

More than 400 community-dwelling older adults were recruited into a clinical trial which compared the effectiveness of diagnosis and treatment through geriatric assessment with that provided through usual community physician care. Six recruitment methods were utilized: referrals, solicitations, presentations, media, mailings, and fliers. Each method is described and its results reported in terms of numbers recruited, yield, and cost per participant. The most efficient method was referrals; the method producing the largest number was presentations; the least effective method was fliers. Problems and solutions are discussed, and guidelines for recruiting older adults are suggested. These guidelines include: monitoring with accompanying adaptation, targeting the groups most likely to benefit, providing incentives, and reducing uncertainty among potential participants.

Racial Differences in Parents' Distrust of Medicine and Research

OBJECTIVE To assess and compare the attitudes and trust that African American and white parents have toward their children participating in research. DESIGN Self-administered, cross-sectional survey of a convenience sample of parents. SETTING Primary Care Center at Childrens Hospital of Pittsburgh from August 2004 through April 2005. PARTICIPANTS One hundred ninety parents (140 African American and 50 white parents). OUTCOME MEASURE Parental distrust of medical research as measured by a summative score of distrusting responses to 8 questions assessing trust in research. RESULTS African American parents had significantly greater distrust than white parents (67% vs 50%, P = .04). Education was also associated with having significantly greater distrust (74% of those with <high school education vs 44% of college graduates, P = .03). However, African American race remained a predictor of distrust even when education was controlled for (odds ratio, 2.25; 95% confidence interval, 1.01-5.01). CONCLUSIONS The degree of parental distrust toward medical research was significantly greater among African American parents. Parental distrust may be a barrier to enrollment of African American children in clinical research. Strategies for overcoming the higher level of distrust in African American parents are warranted for ensuring adequate representation of African American children in clinical research.

The Social Ecological Model as a Framework for Determinants of 2009 H1N1 Influenza Vaccine Uptake in the United States

Research on influenza vaccine uptake has focused largely on intrapersonal determinants (perceived risk, past vaccine acceptance, perceived vaccine safety) and on physician recommendation. The authors used a social ecological framework to examine influenza vaccine uptake during the 2009 H1N1 pandemic. Surveying an adult population (n = 2,079) in January 2010 with significant oversamples of Blacks and Hispanics, this study found that 18.4% (95% confidence interval = 15.6-21.5) had gotten the 2009 H1N1 vaccine. Variables at each level of the social ecological model were significant predictors of uptake as well as of intent to get the vaccine. The intrapersonal level explained 53%, the interpersonal explained 47%, the institutional level explained 34%, and the policy and community levels each explained 8% of the variance associated with vaccine uptake. The levels together explained 65% of the variance, suggesting that interventions targeting multiple levels of the framework would be more effective than interventions aimed at a single level.

Racial Disparities in Exposure, Susceptibility, and Access to Health Care in the US H1N1 Influenza Pandemic

OBJECTIVES We conducted the first empirical examination of disparities in H1N1 exposure, susceptibility to H1N1 complications, and access to health care during the H1N1 influenza pandemic. METHODS We conducted a nationally representative survey among a sample drawn from more than 60,000 US households. We analyzed responses from 1479 adults, including significant numbers of Blacks and Hispanics. The survey asked respondents about their ability to impose social distance in response to public health recommendations, their chronic health conditions, and their access to health care. RESULTS Risk of exposure to H1N1 was significantly related to race and ethnicity. Spanish-speaking Hispanics were at greatest risk of exposure but were less susceptible to complications from H1N1. Disparities in access to health care remained significant for Spanish-speaking Hispanics after controlling for other demographic factors. We used measures based on prevalence of chronic conditions to determine that Blacks were the most susceptible to complications from H1N1. CONCLUSIONS We found significant race/ethnicity-related disparities in potential risk from H1N1 flu. Disparities in the risks of exposure, susceptibility (particularly to severe disease), and access to health care may interact to exacerbate existing health inequalities and contribute to increased morbidity and mortality in these populations.

The relationship between age and major league baseball performance: implications for development.

Lifetime performance data of 388 baseball players active in 1965 were analyzed to determine the age of peak performance for skills required to play baseball, to derive age-performance curves for athletic productivity, and to assess the magnitude of individual differences among elite and less able players. Cross-sectional and longitudinal analyses show that athletic performance on key indicators rises relatively quickly from age 19 to a peak age of 27 and then declines. The primary difference between elite and less able players is that performance of the elite players remains high for a longer period of time and decays more gradually. The performance of the most elite players is superior to that of less able players even at very early ages. These results parallel findings reported for other achievement domains and can be explained in terms of basic developmental processes involving the interaction of experience, physiological capacity, and motivation.

Factors Affecting Older African American Women's Decisions to Join the PLCO Cancer Screening Trial

PURPOSE The purpose of this study is to describe the factors associated with the decisions of older African American women to join the PLCO (Prostate, Lung, Colorectal and Ovarian) Cancer Screening Trial when recruited. METHODS African American women between ages 55 and 74 years who were never diagnosed with a PLCO cancer were eligible for our study. Two methods of recruitment were used. First, mailings were sent to a random sample of women describing the PLCO followed by a telephone call to determine interest in the PLCO. If women were not interested in PLCO but consented to participate in our study, they were interviewed immediately. Second, we followed up with African American women who responded to mass mailings sent out before the start of our study by the Pittsburgh PLCO office. Women completed an interview about their cancer and clinical trial knowledge, attitudes, beliefs, and behaviors. The responses of women who joined the PLCO Trial are contrasted with the responses of women who did not join. RESULTS Numerous factors were associated with the decision of older African American women to join the PLCO, including perceptions of cancer prevention and detection, the experience of having a loved one with cancer, knowledge of and experience with clinical trials, and beliefs regarding the benefits and risks of clinical trial participation. CONCLUSION Minority recruitment to cancer clinical trials could be increased by designing interventions focused on individual, organizational, and community needs.

Self-Care and Professionally Guided Care in Osteoarthritis Racial Differences in a Population-Based Sample

Objective: The aim of this study was to examine the prevalence of self-management practices among older White and African American persons with osteoarthritis. Self-management was defined broadly to include all behaviors adopted to reduce morbidity, whether recommended by physicians or not. Methods: A population-based sample of Medicare beneficiaries (N = 551) was recruited. An expanded set of self-management behaviors using structured and open-ended inquiry, along with use of arthritis-specific medications was elicited. Results: Few differences in self-care behaviors between race groups were found. However, older African American persons were significantly less likely to have prescriptions for nonsteroidal anti-inflammatory agents (NSAIDs) and more likely to use over-the-counter nonprescription analgesics. Discussion: Older White and African American persons made similar use of self-care strategies to reduce disease morbidity. African Americans without access to prescription pain relievers substituted nonprescription analgesics. A broader view of self-management is valuable for assessing the ways people may move between professionally guided care and self-care.

Self care for chronic illness: Older African Americans and whites

In-person interviews with two hundred and twenty-one older African Americans and whites in Allegheny County, Pennsylvania on their use of self care activities in the care of one of four chronic illnesses (chronic obstructive pulmonary disease (COPD), heart disease, diabetes mellitus, and arthritis, addressed which types of self care they used for each of these illnesses) the similarities and differences between African Americans and whites in their use of self care and how self care is initiated, modified and integrated into a context that includes help from others. The most common response in each of the illnesses was the use of medications or medical treatments by both African Americans and whites. However, there were some differences in the self care practices used by these two groups by illness type. Whites reported monitoring their illness significantly more than African Americans for diabetes and using assistive devices in the management of COPD significantly more than African Americans. While both African Americans and whites practice self care similarly in the management of heart disease, African Americans reported greater use of exercise in their management of arthritis. The amount of assistance provided by others in support of self care varied by illness and by African American and white. The differences in self care usage may be attributed to many factors, among them, differences in cultural experiences with the illness, health beliefs regarding its efficacy and the amount of assistance received from informal supports.