CONTEXT: Despite theoretical concerns that health care related distrust may lead to poor health outcomes by interfering with effective health care, little is currently known about the prevalence or outcomes of distrust of the health care system in the United States. OBJECTIVE:To investigate the association between distrust of the health care system and self-reported health status among the general population in the United States.DESIGN: Random-digit-dialing telephone survey. PARTICIPANTS:Nine hundred and sixty-one adult residents of the continental U.S.PRIMARY MEASURES: Distrust of the health care system and self-reported health status.RESULTS: Distrust of the health care system is relatively high in the United States, with between 20% and 80% of respondents reporting distrust for each item on the Health Care System Distrust scale and a median scale score of 31 (potential range from 10 to 50). Distrust of the health care system is strongly associated with self-reported fair/poor health (odds ratio [OR] 1.40%, 95% confidence interval [CI] 1.12 to 1.75 for each standard deviation increase in distrust), even after adjusting for sociodemographic characteristics, access to health care and trust in primary physicians. In contrast, low trust in one's primary physician is much lower (only 10% to 20% of respondents reported distrust for each item) and is not associated with health status.CONCLUSIONS: Distrust of the health care system is relatively high in the general population in the United States and is strongly associated with worse self-reported health. Further studies are needed to assess the direction of this association and the mechanisms involved.

BACKGROUND: Distrust of the health care system may be a significant barrier to seeking medical care, adhering to preventive health care and treatment regimens, and participating in medical research. OBJECTIVE:To describe the development and psychometric testing of an instrument (the Health Care System Distrust Scale) to measure distrust of the health care system. METHODS: Scale development involved 2 phases. In Phase 1, a pilot instrument was developed based on a conceptual model of health care-related distrust. Draft items were created using focus group sessions with members of the general public, literature review, and expert opinion. Draft items were pilot tested with 55 individuals waiting to be assigned to jury duty at the Municipal Court of Philadelphia. A priori , candidate items for elimination or revision included those with >5% missing data, extremely low or high interitem or item-total correlations, or those having a negative effect on the scale's internal consistency. In Phase 2, we conducted a survey of 400 prospective jurors to assess the reliability and validity of the final scale scores. RESULTS:In Phase 1, a 10-item scale was constructed that included 4 items measuring honesty, 2 items measuring confidentiality, 2 items measuring competence, and 2 items measuring fidelity. The participants in Phase 2 had a mean age of 41 years. Forty-three percent were African-American, 45% white, and 4% Hispanic. Scores on the Health Care System Distrust scale ranged from 12 to 46 with a possible range from 10 to 50. The mean score was 29.4 with a standard deviation of 6.33. No item had over 5% missing data. Internal consistency (Cronbach's α α α α ) was 0.75. Item-total correlations ranged from 0.27 to 0.57. Principal components analysis revealed 1 general component accounting for 32% of the variance. Nine of the variables had loadings higher than 0.40. As predicted, distrust of the health care system was higher among African Americans than whites and was inversely correlated with trust in personal physicians. A merican health care has undergone tremendous change over the past several decades. Some of these changes, such as the development of effective screening tests and treatments for various diseases, have the potential to greatly reduce the burden of disease in the United States. However, this potential is threatened by another major change: rising distrust of physicians and the health care system. [1][2][3][4] Concern about the prevalence and impact of health care-related distrust has led to the rapid growth of research surrounding the constructs of trust and distrust. The ability to measure health care-related trust and distrust is an important contribution to this research effort. CONCLUSIONS: 5,6Defining trust and distrust is both complex and necessary for any measurement effort. Most scholars agree that trust requires several key components, including significant personal vulnerability of the truster, uncertainty about the future action of others (the trustee), and a specific object or issue that is e...

Attitudes about genetic testing are likely to be an important determinant of uptake of predictive genetic tests among the general public. Several prior studies have suggested that positive attitudes about genetic testing may be inversely related to knowledge about genetic testing. We conducted a random-digit-dialing (RDD) telephone survey of 961 adults in the continental United States to determine the associations among knowledge of, attitudes about, and perceptions of eligibility for genetic testing for cancer risk. Knowledge about genetic testing for cancer risk was generally high, with a mean accuracy score of 72%. Attitudes about genetic testing for cancer risk were also generally positive, with 87% of respondents reporting genetic testing for cancer risk would be used to help doctors manage their health care and 85% to help scientists find cures for diseases. In contrast, 58% of respondents thought genetic testing for cancer risk would be used to prevent them from getting health insurance and 31% to allow the government to label groups as inferior. Twenty-nine percent of respondents thought they were currently eligible for testing. After adjustment for sociodemographic characteristics and family cancer history, higher knowledge was correlated with more positive attitudes about testing, but not with negative attitudes or perceptions of testing eligibility. Family history was positively associated with perceptions of eligibility (OR 3.49, 95% CI 2.36-5.18), and higher levels of education were inversely associated with perceptions of eligibility (OR 0.55, 95% CI 0.32-0.94 for comparison of college or higher vs. less than high school). These results suggest that most members of the general public are knowledgeable and have positive attitudes about genetic testing for cancer risk and that greater knowledge is correlated with more positive attitudes about the benefits of testing.

A total of 2,400 questionnaires were mailed to members of two mid-Atlantic breast cancer awareness/support groups to investigate the association between attitudes, knowledge, and use of BRCA1/2 testing among women with early-onset breast cancer. Of the 493 (21%) questionnaires returned, 406 respondents had a diagnosis of breast cancer, of whom 248 were diagnosed prior to age 50 and included in the analyses. Eighty-three percent (206/248) of these women had heard of BRCA1/2 testing and 12.5% (31/248) had undergone BRCA1/2 testing. Among women who had heard of BRCA1/2 testing, women who had been tested were younger (p = 0.03), more likely to have a college education (p = 0.03), more likely to have a family member who had undergone BRCA1/2 testing (p = 0.005), and had greater knowledge, more positive attitudes, and fewer negative attitudes about BRCA1/2 testing (p = 0.02, p = 0.004, and p = 0.004, respectively). In this sample, knowledge regarding BRCA1/2 testing is high, but uptake of genetic testing is low. Lack of information regarding how genetic testing might alter health-care decisions and fear about the genetic testing procedure, its costs, and possible false-positive results are associated with low uptake of genetic testing. Further education regarding these specific points may enhance the use of genetic testing.