1. Decline OR Unable to Contact
Effective Recruitment Strategies for Multi-Center, Chronic Kidney Disease Adherence Research
Andrea C. Goodman1; Michelle N. Eakin, PhD1; Cozumel S. Pruette, MD1, MHS; Susan R. Mendley, MD2;
Shamir Tuchman, MD; MPH3; Tammy McLoughlin Brady1, MD, PhD; Barbara A. Fivush1, MD; Kristin A. Riekert1, PhD
1Johns Hopkins School of Medicine, Baltimore MD, 2University of Maryland School of Medicine, Baltimore MD, 3Children’s National Medical Center, Washington DC
Introduction
Retention Strategies
Conducting Assessment Visits. Study visits were conducted at a location and time convenient to the families including the participants’ home on evenings and weekends.
Compensation. Participants were compensate $100 for full assessments (Baseline 12- and 24-Months) and $50 for outcome only assessments (6- and 18-Months)
Recruitment and retention is challenging for all studies, but particularly with studies that target vulnerable individuals including adolescents and those known to be nonadherent to treatment.
A common reason for not participating in research is lack of time or inconvenience of visits.
Results
Table 1 – CHAT Screening, Recruitment, and Retention
Table 3 – CHAT Demographics
Race and gender as reported in the medical record. Age calculated as of screening date
JHU
UMD
CNMC
Overall
Screened
1354
253
1877
3484
Sent Opt-Out Letter
222 76
135
433
Requested not to be Contacted 1 9 10
Eligible
144 (11%)
55 (22%)
102 (16%)
301 (9%)
Consented
Declined
Unable to be contacted
68 (48%)
67 (46%)
9 (6%)
30 (55%)
3 (5%)
22 (40%)
30 (30%)
27 (26%)
45 (44%)
128 (34%)
97 (42%)
76 (25%)
Baseline
Visit 1
Visit 2
67 (99%)
66 (97%)
30 (100%)
29 (97%)
128
127 (99%)
124 (97%)
6-Month
56 (82%)
25 (83%)
23 (77%)
104 (81%)
12-Month
55 (81%)
26 (87%)
106 (83%)
18-Month (of those out of window)
53 (78%)
22 (73%)
21 (70%)
16 (53%)
14 (47%)
119
91 (76%)
88 (74%)
24-Month (of those out of window)
48 (71%)
20 (67%)
18 (60%)
114
87 (76%)
84 (74%)
Objectives
Enrolled
(N=128)
Decline OR Unable to Contact
(N=173)
Mean Age, years
14.0
14.7
 Race n (%)
Black
64 (50%)
77 (45%)
White
53 (41%)
74 (43%)
Hispanic
1 (<1%)
5 (3%)
Other
10 (8%)
10 (6%)
Not Reported
0 (0%)
7 (4%)
Gender, n (%) Female
57 (45%)
82 (47%)
To illustrate strategies used to obtain high recruitment and retention of a diverse sample in a multi-site, longitudinal study of adolescents’ antihypertensive adherence.
Materials &Methods
The CKD: Hypertensive Adherence in Teens (CHAT) Research Study is an observational, longitudinal, multi-center research study of adolescents age years with Chronic Kidney Disease (CKD) and prescribed an antihypertensive medication.
Teens were recruited from the Pediatric Nephrology departments at The Johns Hopkins Children Center (JHU), The University of Maryland Medical Center (UMD), and Children’s National Medical Center (CNMC).
Many families lived >1 hour driving radius of Baltimore area with the longest time being 3 hours one way.
Assessments:
Conducted at Baseline, 6-, 12-, 18-, and 24- months
Each assessment consisted of two study visits lasting 2+ hours.
Included a battery of survey measures, 24-hour Ambulatory Blood Pressure Monitoring, and use of an electronic medication monitoring device for 2 weeks.
Conclusions
Use of an active recruitment approach allowed comprehensive identification of the small population eligible for the study.
Few families (<3%) opted out of being contacted and no family expressed concern about being contacted for a research study.
Active screening permits evaluation of the representativeness of the recruited sample to the overall clinic populations.
We hypothesize that our recruitment and retention strategies allowed us to recruit a sample that is >50% minority and is demographically representative of the overall clinic population.
Use of volunteer services allowed for efficient use of a small staff to recruit, conduct study home visits and abstract medical record information.
Our retention numbers are high for a study targeting adolescents nonadherent with treatment. Families appreciated study visits being conducted at home and not affecting school or work schedules.
We identified several creative approaches to recruitment and retention that are replicable in other studies of hard-to-reach populations.
Recruitment & Retention Strategies
Recruitment Strategies
Use of Volunteer Services. 2 research assistants and the study RC employed by JHU became volunteers at each site and were supervised by the site PI. This allowed all research staff to be listed on every site’s IRB, have access to screening databases, and view scheduling and medical records.
Active Recruitment Strategies.
IRBs at all sites approved real-time monitoring of clinic schedules and use of medical records to identify eligible teens (confirmed by treating nephrologist), followed by sending the family an opt-out letter.
If the family did not opt-out of being contacted within a specified period, research staff telephoned to describe the study and assess eligibility.
Contacts are tracked and staff vary days and times of calls including at least 2 on the weekend and 4 in the evening.
Table 2 – Reason for Non-Retention
Baseline
6-Month
12-Month
18-Month
24-Month
Unable to Contact 6 5 9 7
Could not Schedule Visit in Window 3 2 1
Withdrew from Study 4
Hospitalized
Off Hypertension Medication 10
Moved
Other
Funded by R01 DK092919