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 RESULTSThis 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 stresspatients onto non-therapeutic studies at a single institution. Physical • Times when patients are too sickseparation between hospital clinics that see AYA patients, Death: 2 • When providers or parents indicate patients are not approachableunpredictability of patient schedules, typical difficulties associated Active Withdraw: 2 Identifying Eligible Patients:with the stress of cancer treatment, and the mobile nature of the AYAage 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 providerMethods 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 forschedules 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: 0Methods for Retaining AYA Patients Not to Time Point: 15 12 Months (N=19)• Collection of multiple types of contact (phone number, emailaddress, 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 appointmentsdates 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
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