Lafposter2011 (2)


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Lafposter2011 (2)

  1. 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 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