PURPOSE: To assess the late and long‐term health and psychosocial effects experienced by cancer survivors diagnosed in adolescence and young adulthood (AYA), we are developing a statewide cohort of survivors of AYA cancers in a multi‐ethnic population in Texas. First, we are conducting a multi‐phase pilot study to evaluate (1) recruitment feasibility, (2) user‐friendliness of completing a health survey, and (3) willingness to participate in a longitudinal cohort study. Methods: In Phase 1 of our pilot, we enrolled patients from survivorship clinics affiliated with Baylor College of Medicine (n=16). Eligible participants were diagnosed with cancer at 15‐39 years old, ≥2 years post‐diagnosis, and English‐speaking. We asked participants to complete a self‐administered health survey on paper followed by a short feedback survey, to be returned in clinic or via mail. We calculated descriptive statistics, and evaluated demographic differences between responders and non‐ responders using Fisher’s exact test.
RESULTS: Of those approached, two declined to participate (11.1%). Of those enrolled, the mean (range) age at diagnosis and enrollment was 22 (15‐37) and 30 (21‐46) years, respectively. Lymphoma (38%) and germ cell tumor (19%) were the most common diagnoses. The majority of participants were Hispanic (44%) or non‐ Hispanic white (38%). Nine participants (56%) completed and returned the health survey; responders were older (≥30 years old) than non‐responders at enrollment (p=0.04), but were similar on other demographic factors (p>0.05). Half of responders said they would prefer to complete the survey online. Additionally, 88% said they would be willing to complete a biannual health survey, travel to a health facility for a physical exam, and share parent contact information to invite them to participate; 100% said they would be willing to sign a medical records release and provide a biological specimen.
CONCLUSION: Our response rate is comparable to other cohort studies targeting AYA. To ensure effective recruitment for the future cohort, Phase 2 of the pilot is currently underway, which involves (1) evaluation of an online version of the health survey (also in Spanish) and (2) focus groups to understand what motivates AYA to participate in long‐ term research studies.
