A paradigm for understanding trust and mistrust in medical research: The Community VOICES study.

BACKGROUND: To promote justice in research practice and rectify health disparities, greater diversity in research participation is needed. Lack of trust in medical research is one of the most significant obstacles to research participation. Multiple variables have been identified as factors associated with research participant trust/mistrust. A conceptual model that provides meaningful insight into the interplay of factors impacting trust may promote more ethical research practice and provide an enhanced, actionable understanding of participant mistrust. METHODS: A structured survey was developed to capture attitudes toward research conducted in emergency situations; this article focuses on items designed to assess respondents' level of trust or mistrust in medical research in general. Community-based interviews were conducted in English or Spanish with 355 New York City residents (white 42%, African American 29%, Latino 22%). RESULTS: Generally favorable attitudes toward research were expressed by a majority (85.3%), but many respondents expressed mistrust. Factor analysis yielded four specific domains of trust/mistrust, each of which was associated with different demographic variables: general trustworthiness (older age, not disabled); perceptions of discrimination (African American, Latino, Spanish language preference); perceptions of deception (prior research experience, African American); and perceptions of exploitation (less education). CONCLUSIONS: The four domains identified in the analysis provide a framework for understanding specific areas of research trust/mistrust among disparate study populations. This model offers a conceptual basis for the design of tailored interventions that target specific groups to promote trust of individual researchers and research institutions as well as to facilitate broader research participation.

Genetic and lifestyle causal beliefs about obesity and associated diseases among ethnically diverse patients: a structured interview study.

BACKGROUND: New genetic associations with obesity are rapidly being discovered. People's causal beliefs about obesity may influence their obesity-related behaviors. Little is known about genetic compared to lifestyle causal beliefs regarding obesity, and obesity-related diseases, among minority populations. This study examined genetic and lifestyle causal beliefs about obesity and 3 obesity-related diseases among a low-income, ethnically diverse patient sample. METHODS: Structured interviews were conducted with patients attending an inner-city hospital outpatient clinic. Participants (n=205) were asked how much they agreed that genetics influence the risk of obesity, type 2 diabetes, heart disease, and cancer. Similar questions were asked regarding lifestyle causal beliefs (overeating, eating certain types of food, chemicals in food, not exercising, smoking). In this study, 48% of participants were non-Hispanic Black, 29% Hispanic and 10% non-Hispanic White. RESULTS: Over two-thirds (69%) of participants believed genetics cause obesity 'some' or 'a lot', compared to 82% for type 2 diabetes, 79% for heart disease and 75% for cancer. Participants who held genetic causal beliefs about obesity held more lifestyle causal beliefs in total than those who did not hold genetic causal beliefs about obesity (4.0 vs. 3.7 lifestyle causal beliefs, respectively, possible range 0-5, p=0.025). There were few associations between causal beliefs and sociodemographic characteristics. CONCLUSIONS: Higher beliefs in genetic causation of obesity and related diseases are not automatically associated with decreased lifestyle beliefs. Future research efforts are needed to determine whether public health messages aimed at reducing obesity and its consequences in racially and ethnically diverse urban communities may benefit from incorporating an acknowledgement of the role of genetics in these conditions.

Patient satisfaction with care at directly observed therapy programs for tuberculosis in New York City.

OBJECTIVES: This study examined patients' satisfaction with New York State's tuberculosis (TB) directly observed therapy (DOT) programs in New York City. METHODS: A survey was conducted of 435 patients at 19 public, private, and community-based TB DOT clinics about their satisfaction with various aspects of the programs. RESULTS: Patients identified the opportunity to receive good medical care as the most important aspect of TB DOT. Also significant was the supportiveness of DOT staff. Receiving incentives to encourage participation was statistically less important. Half of the patients reported being better off with DOT than with self-supervised care. CONCLUSIONS: This study confirms the value of patient-focused care among inner-city TB patients.

Directly observed therapy in an inner city hospital.

SETTING: A directly observed therapy (DOT) tuberculosis (TB) program in a large urban teaching hospital in the East Harlem section of New York City. OBJECTIVE: In response to an emergent epidemic of TB, the State Department of Health mobilized a coalition of providers outside the public sector to provide DOT and medical care for people with TB, with the goal of treatment until cure. The results of the first 150 patients of one program are reviewed. DESIGN: A multidisciplinary DOT team coordinated treatment at several sites within and without the institution, according to established medical regimens. RESULTS: The program served a hard-to-reach population, 63% human immunodeficiency virus (HIV) positive, 64% substance users, 17% inadequately housed and 15% indigent. In the program's first three years there was 85% overall compliance with DOT visits. Using the completion of therapy index, 66% of patients completed therapy, 13% remained on treatment, 7% transferred to self medication and 1% were lost to follow up. No patient on DOT developed a drug resistant organism. There were no hospital readmissions for TB. CONCLUSION: The experience of this program demonstrates the efficacy of an intensive, personalized DOT program in ensuring treatment until cure.

Tuberculin and anergy skin testing of patients receiving long-term hemodialysis.

STUDY OBJECTIVES: Immunocompromised patients with chronic renal failure requiring hemodialysis (HD) are at increased risk of developing tuberculosis (TB). Routine TB screening of this population is recommended. This study examined the frequency of TB reactions and anergy in HD patients in a community with a high prevalence of TB. DESIGN: Outpatients in a hospital-based HD center were screened with tuberculin, Candida, and mumps antigen. RESULTS: Forty percent of patients were anergic and 19% were tuberculin reactors. No demographic factors correlated with either test results. CONCLUSIONS: There was a high rate of TB infection and anergy in this HD center. Despite the high rate of anergy, tuberculin testing remains a useful test in this population. Anergic patients require further clinical evaluation for TB. Other HD programs should tuberculin and anergy test their patients to determine prevalence in their populations.

Hospital care of tuberculosis patients referred for directly observed therapy in New York City: identifying factors in prolonged stays.

Individuals hospitalized and treated for tuberculosis (TB) who were then enrolled into TB directly observed therapy at four study hospitals in New York City (NYC) were identified. Review of hospital medical records determined whether the hospitalizations were warranted and whether lengths of stay were prolonged. Most hospitalizations were appropriate but over 70 percent of cases analyzed had prolonged stays. Of these, almost half were to document bacteriologic response to anti-TB treatment. Some were prolonged due to misunderstanding of state recommendations. Focused educational efforts could significantly reduce lengths of stay and save up to $9.7 million annually in NYC hospitalization costs.

Public health campaign funds provide a "safety net" for indigent tuberculosis patients at the Mount Sinai Hospital.

This article describes the development of a partnership between a voluntary health care institution and a state agency for a focused public health program providing vital clinical, public health, and social supportive services. In addition to the historical development of this alliance, the article illustrates joint problem-solving processes to address complex issues. Since its inception in 1992, this collaboration has resulted in significant improvements in the health status of a high-risk, difficult-to-serve, indigent population that would otherwise pose a public health threat to the community. Demographics of 17 indigent patients are described. Nine have completed treatment for tuberculosis under directly observed therapy and completion is in sight for six others. None have been lost to follow-up.