Project ACCRUE

Abstract

BACKGROUND Longer lifespans conferred by antiretroviral therapy result in more time exposed to cancer risk for people living with HIV/AIDS (PLWHA). Given limited diversity in AIDS Malignancy Consortium (AMC) clinical trials, there is need for new approaches to educate PLWHA in order to improve awareness and participation in AMC trials. METHODS With input from a community advisory board, Project ACCRUE (AMC Clinical Trials at Carolina Ramp Up Enrollment) conducted a key informant interview with service providers; online organizational surveys of AMC trial awareness and resource needs; and “lunch and learn” educational sessions, including pre- and post-intervention knowledge assessments. RESULTS Providers indicated that transportation, mistrust of the medical community, and affordability were barriers to trial participation, while printed educational materials could facilitate trial recruitment. Providers indicated that their clients had concerns about participating in trials, but also recognized several benefits of participation including access to medical personnel and treatment, receipt of monetary incentives, and a feeling of satisfaction from helping others. In lunch and learn sessions, use of an audience response system to collect questionnaire data improved scores on knowledge-based items [S(55) = 460; P < .0001] compared to a pencil and paper test [S(20) = 12.5; P = .6541]. LIMITATIONS Generalizability may have been compromised by the small sample size. Long-term recall was not measured, and the short retest interval may have impacted post-intervention assessments. CONCLUSIONS Service providers recognize the benefits of working with researchers to educate patients about HIV-related cancers and participation in clinical trials. Lunch and learn sessions improved knowledge and perceptions about clinical trials for PLWHA.

Stakeholder engagement to informHIVclinical trials: a systematic review of the evidence

“…Of the 108 studies, 48 studies (44.4%) conducted stakeholder engagement in high‐income countries 5, 23, 25, 26, 27, 28, 29, 30, 31, 32, 33, 34, 35, 36, 37, 38, 39, 40, 41, 42, 43, 44, 45, 46, 47, 48, 49, 50, 51, 52, 53, 54, 55, 56, 57, 58, 59, 60, 61, 62, 63, 64, 65, 66, 67, 68, 69, 70. In contrast, fewer studies conducted stakeholder engagement in middle‐ (30 studies; 27.8%) 71, 72, 73, 74, 75, 76, 77, 78, 79, 80, 81, 82, 83, 84, 85, 86, 87, 88, 89, 90, 91, 92, 93,...…”

Participant characteristics and clinical trial decision-making factors in AIDS malignancy consortium treatment trials for HIV-infected persons with cancer (AMC #S006)

“…The AMC has active involvement of community representatives in all phases of study development and implementation, and their expertise can be further leveraged based on these findings. For example, a recent study 24 sought community advisory board input to develop their ‘Lunch and Learn’ intervention aimed to raise awareness and knowledge of AMC clinical trials.…”