Table 2.
Studies Measuring Trust Quantitatively
| Study | Sample size | GRADE and level of analysis | Type of measure | Validity of measure | How trust was measured | Outcome variables | Trust-relevant results | Other significant variables |
|---|---|---|---|---|---|---|---|---|
| Mahaney‐Price et al.34 | African American (n = 82) | Low quality | Investigator developed dichotomous question, response options “Yes, I do not trust” and “No” | Not validated | Dichotomous question: “Do not trust health care providers” | Possession of living will (yes/no) Desiring help in writing living will (yes/no) |
Trust was not significantly associated with having a living will | Older age, race, possession of health insurance (Medicare), type of disease, and inference with work life |
| Multiple logistic regression | ||||||||
| Race of health care provider not mentioned. | ||||||||
| White (n = 118) | ||||||||
| Used for trust analysis (n = 30). Unsure what proportion of these are African American | ||||||||
| McKinley et al.12 | African American (n = 92) | Low quality | Four-point Likert Scale (strongly agree to strongly disagree) | Not validated | Likert Scale questions explored patient beliefs about: (1) Trustworthiness of medical system. (2) The possibility of receiving inadequate or excessive medical care. (3) Whether having a living will would increase sense of being in control of their medical care when terminally ill. |
Desire for more or less life-sustaining treatments | African American and White patients answered questions regarding trusty identically. | Bivariate analyses: |
| Multiple logistic regression | ||||||||
| African American race, stronger religious beliefs, and lower income associated w/LST. | ||||||||
| White (n = 114) | ||||||||
| Intent or lack of intent to complete a living will | ||||||||
| 96% of each group felt that the medical system was trustworthy | ||||||||
| White race, more education, higher income, and younger age associated w/living will | ||||||||
| 94% felt that doctors can be trusted | ||||||||
| Logistic analyses | ||||||||
| 96% felt that doctors generally treat all patients equally well | ||||||||
| After controlling for income, strength of religious beliefs, and age, African American patients were more likely to desire more LST than Whites. | ||||||||
| Less than 20% of both groups feared inadequate medical care | ||||||||
| Race of health care provider not mentioned | ||||||||
| Waters26 | African American (n = 27) | Low quality | AD-KAUQ, two trust items. One item assessed using a 4-point Likert Scale; the other assessed using a 5-point Likert Scale. | Inter-rater agreement 0.91, Cohen's kappa 0.89. | Likert Scale questions were designed to obtain information about advance directives regarding knowledge (1 item), utilization (1 item), and attitudes (includes trust) (11 items). In the attitudes section, trust items are rated on a scale of alternative responses ranging from (strong disagree) to (strongly agree). Items: Health care providers will treat you negatively if you have a living will (4-pt scale) Extent of caring by health care providers if you have a living will (5-pt scale) |
Change in participants' initial and final responses on the AD-KAUQ questions regarding knowledge, utilization, and attitudes toward EOL care directives | Participants slightly disagreed that health care providers would treat them negatively if they had a living will. | Community-centered educational group discussion significantly changed participants' consideration for using a living will. |
| Paired t and McNemar tests (p ≤ 0.05) | ||||||||
| No comparison group | ||||||||
| Participants believed that health care providers would provide adequate care if they had a written living will. | ||||||||
| Communication education significantly changed participants' perceptions of whether discussion about a living will should occur in a community setting. | ||||||||
| Race of health care provider not mentioned. | ||||||||
| Smith et al.31 | African American (n = 115) | Moderate quality | 1-item from the 135-item, NEST, 4-point Likert Scale (strongly agree to disagree) | Validated, α = 0.63–0.85.56 | Likert Scale Questions assessed quality of patient–physician relationship: “Patient has complete trust in the physician.” | Presence of advance care planning (i.e., living will, health care proxy, having talked with family or physician about plans for EOL care) | There was no statistically significant difference between trust in physicians between White and African American patients. | African Americans reported lower quality of the relationship with physicians: |
| Multivariable regression (p ≤ 0.05) | ||||||||
| White (n = 688) | ||||||||
| Physician respects patient | ||||||||
| Physician tells bad news in a sensitive and caring manner | ||||||||
| 96.5% of African American patients agreed that they completely trusted the physician | ||||||||
| Preferences for intensive life-sustaining treatment | ||||||||
| Physician listens to what the patient has to say about illness | ||||||||
| 95.2% of White patients agreed that they completely trusted the physician | ||||||||
| Patient participates in decisions about care | ||||||||
| African American patients have lower ratings of the quality of the relationship with their physicians than White patients. All differences in aspects of the relationship were significant, except trust. | ||||||||
| Physician helps patient with the medical system | ||||||||
| Has an advance care plan | ||||||||
| Adding measures of patient–physician relationship to the multivariable model had no impact on the differences in advance care planning and treatment preferences. | ||||||||
| Race of health care provider not mentioned. | ||||||||
| Patient-reported quality of the patient–physician relationship does not fully explain differences in advance care planning and preferences for LST between African Americans and white Americans. | ||||||||
| Morrison et al.30 | African American (n = 65) | Moderate quality | Part of 51-item measure, 4-point Likert Scale | Validated, α = 0.74. | Likert Scale items on Trust Scale included: “I trust the doctors to make the right decisions about my medical care if I were to be very ill or in a coma” “I worry that I won't be treated as well as other people in the hospital if I were to be very sick or dying.” |
Completion of health care proxy | White (84%) and African American (81.5%) patients agreed that they trusted the physician to make the right decision about their health care if they were to get very sick. | White participants had significantly more knowledge of health care proxies. |
| Multiple logistic regression (p ≤ 0.05) | ||||||||
| White (n = 67) | ||||||||
| African Americans and white Americans were significantly more comfortable talking about EOL care than Hispanic participants | ||||||||
| Latino (n = 65) | ||||||||
| Race of health care provider not mentioned. | ||||||||
| For all participants (white, African, and Hispanic), regression analysis showed positive predictors of health care proxy completion included: | ||||||||
| Knowledge of health care proxies | ||||||||
| Availability of a friend or family member to serve as a proxy | ||||||||
| Previous exposure to ventilator support | ||||||||
| Older age | ||||||||
| Health status perceived as fair or poor | ||||||||
| Morrison and Meier29 | African American (n = 237) | Moderate quality | Part of 51-item measure, 4-Point Likert Scale | Validated, α = 0.74. | Likert Scale items on Trust Scale included “I trust the doctors to make the right decisions about my medical care if I were to be very ill or in a coma” “I worry that I won't be treated as well as other people in the hospital if I were to be very sick or dying.” |
Completion of health care proxy | African American reported more trust in physicians than white Americans did. White (72%) and African American (92%) patients agreed that they trusted the physician to make the right decision about their health care if they were to get very sick. |
White participants were significantly older, more educated, and less likely to have Medicaid |
| Multiple logistic regression (p ≤ 0.05) | ||||||||
| Differences in attitudes and beliefs about the trustworthiness of physicians | ||||||||
| White (n = 239) | ||||||||
| White Americans and African American participants rated their health significantly better than Hispanic participants | ||||||||
| Hispanic (n = 224) | ||||||||
| Difference in fatalism | ||||||||
| Differences in beliefs about surrogate decision making | ||||||||
| Designation of health care proxy associated with: | ||||||||
| Race of health care provider not mentioned. | ||||||||
| Having a primary care physician | ||||||||
| Knowledge about advance directives | ||||||||
| Differences in comfort discussing EOL medical care | Having seen a friend or family member use a mechanical ventilator | |||||||
| Johnson et al.6 | African American (n = 110) | Moderate quality | Health Care System Distrust Scale, 5-Point Likert Scale57 | Validated, α = 0.75. | Likert Scale items measure perceptions of health care system competence (2 items), confidentiality (2 items), honesty (4 items), and fidelity (2 items). | Possession of advance directive (living will or DPOA) | In a multivariate model that included demographic variables and the Health Care System Distrust Scale, trust was a significant predictor of possession of an advance directive or beliefs about hospice among African Americans. However, when spirituality, preferences for EOL care, and beliefs about dying and ACP were added to the multivariate model, there was no longer a significant association between race and possession of an advance directive or beliefs about hospice. | African American Americans were: |
| Multivariate logistic and linear regression (p ≤ 0.05) | ||||||||
| Less educated, had lower income, were less likely to complete a living will or durable power of attorney, had greater preference for life-sustaining treatment, were less comfortable discussing death, spiritual beliefs more likely to conflict with goals of palliative care, and less favorable attitudes toward hospice care | ||||||||
| White (n = 95) | ||||||||
| Attitudes and beliefs about hospice | ||||||||
| Scales used in the study included: Preferences for End-of-Life Care Scale, Spirituality Scale, Beliefs About Dying and Advance Care Planning Scale, and the Health Care System Distrust Scale. | ||||||||
| Race of health care provider not mentioned. | ||||||||
| Loggers et al.32 | African American (n = 68) | Moderate quality | Investigator developed dichotomous question, response options “yes” or “no.” | Not validated | Dichotomous question: “Do you trust your doctors here?” | Receipt of intensive EOL care (i.e., CPR and/or ventilation within last week of life followed by death) | African American patients (98.5%) and White patients (98.7%) trust physician. | African Americans were younger, less likely to be married, less educated, less likely to be insured than White participants, and reported higher scores on the existential and social support subscales than their White counterparts |
| Multiple logistic regression | ||||||||
| White (n = 234) | ||||||||
| Separate regression models due to small African American sample size | Race of health care provider not mentioned. | |||||||
| Zapka et al.37 | African American (n = 51) | Moderate quality | Investigator developed dichotomous question, response options “yes” or “sometimes, but not always.” | Not validated | Dichotomous question: Physician rating items were: consideration of needs, trust in physician's judgments, and belief that physician was an expert “in taking care of medical problems like yours.” | Care experience (e.g., receipt of pain and symptom treatment at home; participation in hospice) | 80 of 90 participants (88.9%) trusted physician's judgment. | Factors influencing use of hospice: disease (HF vs. CA), awareness of diagnosis, better communication, location of treatment (rural vs. urban) |
| Multiple logistic regression (p ≤ 0.05) | ||||||||
| White (n = 39) | ||||||||
| African American patients cared for by White physicians reported significantly lower trust compared with patients' trust levels in the following patient–physician match categories: African American patients cared for by African American physicians; White patients cared for by African American physicians; and White patients cared for by White physicians. | ||||||||
| Patient's perception of physician | ||||||||
| African Americans are less educated | ||||||||
| Patients' awareness of prognosis | ||||||||
| African American patients cared for by African American physicians reported higher ratings of viewing the physician as an expert. | ||||||||
| Significantly more patients of African American physicians reported yes to the rating of trusting the physician's judgment. |
AD-KAUQ, Advance Directives Knowledge, Attitude, and Utilization Questionnaire; DPOA, durable power of attorney; CA, advanced cancer; HF, heart failure; NEST, Needs at the End-of-Life Screening Tool.