Table 2.
Relationship of “Top Box” rating of the overall research experience and respondent characteristic or responses to specific actionable questions (N=3180-4961)
| Respondent characteristic or Question Response Option (percentage) | Percentage with a Particular Characteristic or Question Response Option Who Rated Their Overall Research Experience “Top Box”* | P-Value |
|---|---|---|
|
| ||
|
Sample Characteristics
| ||
| Study limited to participants with certain disease | ||
| Yes (63%) | 73 | Exact P=0.09 |
| No (37%) | 74 | |
|
| ||
| Study involved drug or new device/procedure | ||
| Yes (49%) | 74 | Exact P=0.92 |
| No (51%) | 74 | |
|
| ||
|
Dimension: Communication/Information/Education
| ||
| Research doctor listened carefully | ||
| Always (86%) | 79 | Trend P<0.0001 |
| Usually (11%) | 41 | |
| Sometimes/Never (3%) | 26 | |
|
| ||
| Nurse listened carefully | ||
| Always (97%) | 79 | Trend P<0.0001 |
| Usually (1%) | 35 | |
| Sometimes/Never (1%) | 18 | |
|
| ||
| Research doctor answered questions so I could understand | ||
| Always (87%) | 79 | Trend P<0.0001 |
| Usually (11%) | 38 | |
| Sometimes/Never (2%) | 31 | |
|
| ||
| Nurse answered questions so I could understand | ||
| Always (91%) | 78 | Trend P<0.0001 |
| Usually (7%) | 33 | |
| Sometimes/Never (1%) | 21 | |
|
| ||
|
Dimension: Respect for Participant Preferences
| ||
| Principal investigator treated me with courtesy and respect | ||
| Always (94%) | 77 | Trend P<0.0001 |
| Usually (5%) | 23 | |
| Sometimes/Never (1%) | 26 | |
|
| ||
| Research nurse treated me with courtesy and respect | ||
| Always (96%) | 76 | Trend P<0.0001 |
| Usually (4%) | 19 | |
| Sometimes/Never (<1%) | 19 | |
|
| ||
| Met with principal investigator as much as I wanted to | ||
| Always (61%) | 84 | Trend P<0.0001 |
| Usually (28%) | 60 | |
| Sometimes/Never (11%) | 50 | |
|
| ||
|
Dimension: Trust
| ||
| Had confidence and trust in the principal investigator | ||
| Always (90%) | 78 | Trend P<0.001 |
| Usually (8%) | 33 | |
| Sometimes/Never (1%) | 27 | |
|
| ||
| Had confidence and trust in the research nurse | ||
| Always (90%) | 78 | Trend P<0.0001 |
| Usually (9%) | 32 | |
| Sometimes/Never (2%) | 20 | |
|
| ||
| Dimension: Informed Consent | ||
|
| ||
| Felt pressure from the research staff to join | ||
| Never (94%) | 75 | P<0.001 |
| Not Never** (6%) | 46 | |
|
| ||
| Risks included in the informed consent form | ||
| Always (81%) | 80 | P<0.001 |
| Not Always*** (19%) | 49 | |
|
| ||
| Study details included in the informed consent form | ||
| Yes (80%) | 80 | P<0.001 |
| No (20%) | 52 | |
|
| ||
| Had enough time before signing consent | ||
| Yes (79%) | 79 | P<0.001 |
| No (21%) | 49 | |
|
| ||
| Informed consent form understandable | ||
| Always (78%) | 79 | P<0.001 |
| Not Always* (22%) | 54 | |
|
| ||
| Prepared for what to expect by informed consent form | ||
| Completely (67%) | 83 | P<0.001 |
| Mostly + Somewhat + Not at all (33%) | 53 | |
*
“Top-Box” ratings were either a “9” or “10” on a 10 point scale, with 10 being best.
**
”Not Never” combines responses “Sometimes” + “Usually” + “Always”
***
”Not Always” combines responses “Usually” + “Sometimes” + “Never”