Enhancing recruitment of AYAs with Hodgkin lymphoma through community partnerships: Prioritizing diverse populations.

Abstract

11026 Background: Hodgkin lymphoma (HL) is one of the most common cancers affecting adolescents and young adults (AYAs). AYAs with HL aged 15-39 years are a group historically difficult to reach for research participation. Their voice is critical to enhance care. For two funded qualitative studies, the team engaged in and assessed the feasibility of a community-centered approach to recruit HL patients with 1:1 representation by age [those diagnosed as children (0-14), AYAs (15-39), and above 40 years], race and ethnicity (Black and Hispanic communities), and insurance (private, Medicaid, and uninsured populations). Methods: Recruitment was conducted exclusively through advocacy partner organizations including Blood Cancer United, Stupid Cancer, Cactus Cancer Society, and Elephants & Tea. Study team patient advocates guided recruitment approach, including selecting imagery using a Black-identifying male and Hispanic-identifying female and rephrasing recruitment material language. Advocacy partners utilized their techniques for engaging AYAs, such as Instagram, website posting, email, and/or attendance at member engagement events. Recruitment to the two studies required the study participants online to 1) complete a survey on REDCap documenting their consent using a waiver and 2) provide confirmation of their HL diagnosis by uploading proof to REDCap (e.g., screenshot from their medical record containing their name, date of birth, and HL diagnosis). Results: A total of 389 patients from 46 states or US territories started their REDCap survey and completed the waiver of consent. Of those, 217 (55%) were AYAs at diagnosis and 95 ≥40 (24%). Of the total 389, 85 (22%) were Black, 39 (10%) Hispanic, 34 (9%) had Medicaid, and 12 (3%) were uninsured. 154 (40%) provided proof of diagnosis from 38 states. Of the 154 that uploaded proof of HL diagnosis, 123 (80%) were AYA and 26 (17%) ≥40 years at diagnosis. 17 (11%) were Black, 21 (14%) Hispanic, 17 (11%) with Medicaid, and 3 (2%) uninsured. Documentation was most commonly provided using an after visit summary or visit note (47%), pathology report (19%), or physician signed letter (13%). Conclusions: Partnering with advocacy organizations, particularly those serving AYAs, proved successful in exceeding recruitment goals for AYA patients. Attrition in participation was seen between waiver completion and providing confirmation of diagnosis. AYAs were more likely than adults ≥ age 40 to provide proof of confirmation of diagnosis. Recruitment met national averages for Black representation, but fell short with lower than national average estimates for representation of Hispanic survivors, those on Medicaid or uninsured. Future studies should engage underrepresented populations during the research process to understand how to plan recruitment activities in a way that prioritizes what is most important and impactful for the target population.