Objective: Despite long-standing participation of youth with T1D in research, clinical trials often fail to meet recruitment goals. The current study examined youth, young adult, and caregiver barriers and facilitators of participation in clinical research.
Methods: Participants were recruited online nationally and in-clinic from two diabetes clinics in the U.S. Self-report surveys of research participation, barriers, and interests were obtained; HbA1c was collected via chart review.
Results: Young adults (N=83; Mage=22.2±2.1; MA1c=7.6±1.5) and caregivers (N=81; Mage=45.3±7.8) via online surveys; and, adolescents (N=16; Mage=14.8±1.7; MA1c=9.1±2.2), young adults (N=10; Mage=20.9±2.2; MA1c=8.7±2.4), and caregivers (N=26; Mage=43.4±9.2) via routine diabetes clinic visits participated. Barriers to enrollment in included: missing school or work, potential unwanted side effects, location, time, and limited information. Over half of online participants (54%) reported lack of discussion with their physician about clinical trials, while 46.9% of in-clinic participants indicated their provider never or almost never discussed clinical research. Highest-rated research interests included: finding a cure, new technology, and closed-loop research. Among caregivers (online cohort), preference for the youth’s provider to discuss clinical trials during clinic visits was correlated with HbA1c% (r=0.302, p<.01); caregivers of youth with higher HbA1c indicated stronger desire to learn about research. This relationship was not significant among young adults (r=-0.06, ns).
Conclusions: Youth, young adults, and caregivers expressed interest in learning more about research, yet identified logistical barriers to participation. Education and outreach are needed. Tailored multi-modal recruitment strategies (e.g., online for young adults; via events/provider for caregivers) may help overcome barriers to participation.
S.C. Westen: None. L.M. Anderson: None. S.A. Barry: None. S. Look: None. S. Pinto: None. A. Albanese-O'Neill: None. C.A. Kemp: None. M.J. Haller: Advisory Panel; Self; Pancreum, SAB Biotherapeutics. J.L. Papadakis: None. D. Schatz: None. B.T. Olsen: None. D.M. Janicke: None. J. Weissberg-Benchell: Consultant; Self; Roche Diabetes Care. N. Johnson: None.