Table 2.
Relationship of “top‐box” rating of the overall research experience and respondent characteristic or responses to specific actionable questions (N = 3,180–4,961)
| 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.”