Table 1.
ADRC Retention Survey Responses
| Strategy/tactic | ADRCs, n (%)* | ADRCs, n (%)# |
|---|---|---|
| Community involvement | 25 (100) | 24 (100) |
| • Involve participants in retention (e.g., testimonials) | 21 (84) | 20 (83) |
| • Maintain community advisory boards to assist with understanding participant groups | 19 (76) | 19 (79) |
| • Involve advocates in review of ongoing practices | 14 (56) | 14 (58) |
| • Involve advocates in study design | 5 (20) | 5 (21) |
| • Other ○ Ethics committee that includes participants ○ Focus groups ○ Participant satisfaction surveys |
9 (36) | 9 (38) |
| Study identity | 25 (100) | 24 (100) |
| • Website | 25 (100) | 24 (100) |
| • Center logo | 23 (92) | 22 (92) |
| • Electronic or print newsletters | 22 (88) | 21 (88) |
| 17 (68) | 17 (71) | |
| 11 (44) | 11 (46) | |
| • YouTube | 7 (28) | 7 (29) |
| • Blog | 4 (16) | 4 (17) |
| • Other ○ Live webinars ○ ‘Ask the Expert’ section of center website and participant feedback link |
6 (24) | 6 (25) |
| Study personnel | 24 (96) | 23 (96) |
| • Diverse staff | 23 (92) | 22 (92) |
| • Identify specific staff members who are responsible for retention of particular participants | 20 (80) | 19 (79) |
| • Ensure that specific staff (study clinician) see participants consistently over time | 18 (72) | 17 (71) |
| • New staff training on retention | 14 (56) | 14 (58) |
| • Annual staff training on retention | 9 (36) | 9 (38) |
| • Other ○ Twice annual staff retreat with focus on retention |
1 (4) | 1 (4) |
| Study description | 25 (100) | 24 (100) |
| • Emphasize importance of long-term participation in recruitment materials and consents | 25 (100) | 24 (100) |
| • Provide opportunity to ask questions of qualified researchers at each visit | 25 (100) | 24 (100) |
| • Offer other opportunities for communication/interaction with faculty/staff | 24 (96) | 23 (96) |
| • Engage in family conferences during participation (e.g., for change in diagnosis) | 20 (80) | 19 (79) |
| • Engage in family conferences prior to enrollment | 10 (40) | 9 (38) |
| • Video description | 4 (16) | 4 (17) |
| • Utilize decision aids during informed consent | 4 (16) | 4 (17) |
| • Other ○ Spanish translation ○ Video for lumbar puncture |
2 (8) | 2 (8) |
| Reminders | 23 (92) | 22 (92) |
| • Between-visit telephone calls | 17 (68) | 16 (67) |
| • Send pre-visit materials for completion | 17 (68) | 16 (67) |
| • Mailed appointment cards | 15 (60) | 15 (63) |
| • Appointment cards at each visit | 8 (32) | 8 (33) |
| • Regular PI letters or emails between visits | 6 (24) | 5 (21) |
| • Text message reminders | 2 (8) | 1 (4) |
| • Other | 0 (0) | 0 (0) |
| Contact and scheduling | 25 (100) | 24 (100) |
| • Use data capture system (e.g., REDCap) to monitor visit windows | 23 (92) | 22 (92) |
| • Use alerts to study staff to send visit reminders | 17 (68) | 16 (67) |
| • Use automated email systems to remind participants about visits | 3 (12) | 3 (13) |
| • Use automated telephone systems to remind participants about visits | 4 (16) | 4 (17) |
| • Use automated text messaging systems to remind participants about visits | 1 (4) | 1 (4) |
| • Other ○ ‘personal’ touch calls or emails from familiar staff |
1 (4) | 1 (4) |
| Visit characteristics | 25 (100) | 24 (100) |
| • Offer breaks during visits | 25 (100) | 24 (100) |
| • Permit telephone completion of study partner activities | 25 (100) | 24 (100) |
| • Follow participants by phone if it becomes impossible for them to attend visits due to disease severity | 25 (100) | 24 (100) |
| • Offer water and snacks during visits | 23 (92) | 22 (92) |
| • Schedule visits around participants’ needs/energy level | 22 (88) | 21 (88) |
| • Permit splitting of visits into 2 or more sessions over 2 or more days | 21 (84) | 20 (83) |
| • Permit splitting of visits into 2 sessions in a single day | 20 (80) | 19 (79) |
| • Hold visits at convenient (off site) locations | 10 (40) | 9 (38) |
| • Perform home visits | 9 (36) | 8 (33) |
| • Hold visits during non-traditional hours (evenings) | 5 (20) | 4 (17) |
| • Hold visits during non-traditional days (weekends) | 4 (16) | 3 (13) |
| • Other ○ Nursing home visits |
1 (4) | 1 (4) |
| Benefits of study | 25 (100) | 24 (100) |
| • Provide feedback on annual UDS evaluation to PCP or other provider if requested by participant | 22 (88) | 21 (88) |
| • Provide diagnostic results to participants | 20 (80) | 19 (79) |
| • Provide feedback on non-UDS evaluations (lab values, evaluations, MMSE, etc) to PCP or other provider if requested by participant | 19 (76) | 18 (75) |
| • Provide neuropsychological test results to participants | 17 (68) | 16 (67) |
| • Provide laboratory test results to participants | 17 (68) | 16 (67) |
| • Offer support groups | 17 (68) | 17 (71) |
| • Provide MRI biomarker results to participants | 12 (48) | 11 (46) |
| • Provide amyloid PET results to participants | 8 (32) | 8 (33) |
| • Provide CSF biomarker results to participants | 7 (28) | 7 (29) |
| • Provide FDG PET biomarker results to participants | 7 (28) | 7 (29) |
| • Provide genetic test results to participants | 3 (12) | 3 (13) |
| • Provide free clinical care (e.g., medication prescriptions) to participants | 3 (12) | 3 (13) |
| • Other ○ Provide access to a social worker |
1 (4) | 1 (4) |
| Financial incentives | 19 (76) | 18 (75) |
| • Provide annual cash payment for completing optional study procedures (e.g., lumbar puncture) | 11 (44) | 11 (46) |
| • Provide annual cash payment for completing study visits | 9 (36) | 9 (38) |
| • Provide annual non-cash payment (e.g., gift card) for completing optional study procedures (e.g., lumbar puncture) | 5 (20) | 5 (21) |
| • Provide annual non-cash payment (e.g., gift card) for completing study visits | 5 (20) | 4 (17) |
| • Other | 0 (0) | 0 (0) |
| Reimbursements or cost coverage | 24 (96) | 23 (96) |
| • Cover parking costs | 23 (92) | 22 (92) |
| • Reimburse for taxis or public transportation | 17 (68) | 16 (67) |
| • Provide meal cards or reimburse for meals during visits | 13 (52) | 12 (50) |
| • Provide gas cards or reimburse for mileage | 7 (28) | 7 (29) |
| • Offer lodging for long visits for participants who travel great distances | 5 (20) | 5 (21) |
| • Offer childcare during visits | 0 (0) | 0 (0) |
| • Other | 0 (0) | 0 (0) |
| Non-financial incentives | 22 (88) | 21 (88) |
| • Hold participant gratitude events | 21 (84) | 20 (83) |
| • Send seasonal holiday cards | 15 (60) | 14 (58) |
| • Offer participants value nominal gifts such as pens, magnets, etc. | 13 (52) | 12 (50) |
| • Provide participants awards or certificates of appreciation for milestone visits (e.g., 5- or 10-year interval) | 11 (44) | 10 (42) |
| • Send birthday cards | 9 (36) | 8 (33) |
| • Hold participant holiday celebrations | 5 (20) | 4 (17) |
| • Other ○ ADRC-stamped chocolate bars ○ Bereavement cards ○ Birthday telephone calls |
4 (16) | 4 (17) |
| Special tracking methods | 18 (72) | 17 (71) |
| • Maintain phone tree of individuals to contact if the participant cannot be reached | 16 (64) | 15 (63) |
| • Follow participants on social media and send private messages to remind of appointments or reach out if difficult to reach through traditional modes of communication | 0 (0) | 0 (0) |
| • Attend patient clinical visits as a means to contact them and request completion of study visits | 10 (40) | 10 (42) |
| • Other ○ No shows triaged for more intense calls and follow-up ○ Letters asking for contact if phone number has changed or cannot be reached |
2 (8) | 2 (8) |
*
Proportion of responses based on all ADRCs responding (n=25).
#
Proportion of responses based on ADRCs responses used in multivariable models (n=24).