This project describes methods for recruiting and retaining adolescent and young adult (AYA) oncology patients in psychosocial research studies at a single institution. Key methods included: 1) Monitoring clinic schedules and patient wards daily to identify eligible patients and approach them during appointments to minimize interference. 2) Using a dedicated research assistant to have greater coverage of clinics and flexibility in approaching patients. 3) Collecting multiple contact methods and an alternate contact to facilitate retention through regular reminders via phone, email, and in-person. 4) Carefully tracking patients in databases helped with retention rates averaging over 80% at follow-up timepoints up to a year later despite the challenges of this patient group.

1. METHODS FOR RECRUITMENT AND RETAINMENT OF AYA ONCOLOGY PATIENTS IN PSYCHOSOCIAL RESEARCH
Amy Frohnmayer MA, Susan J. Lindemulder MD, MCR, Rebecca G. Block Phd, MSW, LCSW, Brandon Hayes-Lattin MD, Rebecca Loret de Mola DO
Oregon Health and Science University and Doernbecher Children’s Hospital
Portland, OR
Figure 1: Example of Contact and Completion Rates from the Adolescent and
OBJECTIVE Young Adult Cohort Study at OHSU RESULTS
This project describes methods used and lessons learned in Enrollment (N=59) Important to know when to refrain from approaching patients:
recruiting and retaining adolescent and young adult (AYA) oncology Completed: 58/59 (98%) • Times of high stress
patients onto non-therapeutic studies at a single institution. Physical • Times when patients are too sick
separation between hospital clinics that see AYA patients, Death: 2 • When providers or parents indicate patients are not approachable
unpredictability of patient schedules, typical difficulties associated
Active Withdraw: 2 Identifying Eligible Patients:
with the stress of cancer treatment, and the mobile nature of the AYA
age group challenge recruitment and retention of these patients. Not to Time Point: 6 • Providers should not be relied on for patients referrals, but should
3 Months (N=49) be involved in discussion about patient ability to participate.
• Introduction of the study to patients by providers prior to research staff
Contacted: 49/49 (100%)
approaching patients is not necessary, but can be helpful, particularly with
Completed: 42/49 (86%) sensitive research topics.
Death: 1
METHODS • Often it is easier to approach patients while in the infusion center compared
Active Withdraw: 1 to exam rooms during clinic appointments. This minimizes interference with
clinic routines and long waits for research personnel due to provider
Methods for Recruiting Eligible AYA Patients Not to Time Point: 10
6 Months (N=37) schedules.
• Daily-weekly monitoring of pediatric and adult clinic provider
• A research assistant dedicated to AYA oncology studies is very helpful for
schedules Contacted: 36/37 (97%) both participant recruitment and retainment, allowing for greater coverage of
• Daily-weekly monitoring of pediatric and adult in-patient wards Completed: 30/36 (83%) widespread hospital clinics, flexibility to approach patients with varying clinic
• Weekly email referral requests to providers who see AYA patients
Death: 3 schedules, and assistance with the repeated contacts needed to recruit and
• Flyer placement in high traffic areas for pediatric and adult oncology
retain AYA patients.
patients Active Withdraw: 0
Methods for Retaining AYA Patients Not to Time Point: 15
12 Months (N=19)
• Collection of multiple types of contact (phone number, email
address, mailing address) Contacted: 18/19 (95%) CONCLUSIONS
• Collection of contact information for alternate contact people Completed: 17/19 (89%)
• Establishing contact points prior to and after study assessment due • Patrolling clinic schedules and approaching patients during appointments
dates Table I: Average number of contact points for each time point appear to be the most effective methods to find and recruit AYA oncology
• Reminding participants face-to-face in clinics and on the wards of Average Number of Contacts patients.
assessment due dates • Regularly scheduled reminders and multiple ways to contact AYA patients
• Careful tracking with databases in Excel and Access facilitates is instrumental in patient retention.
retainment 3 month pre-assessment 1.67
•Calling and approaching patients in person appears to be more effective
3 month post-assessment 1.63
for retention.
6 month pre-assessment 1.6 • Lack of an incentive has not been a deterrent to either recruitment or
6 month post-assessment 2.1 retention.
12 month pre-assessment 1.92
12 month post-assessment 1.2