Feasibility and Utility of a Pilot Peer Education Program to Improve Patient Engagement in Lupus Clinical Trials: Implementation and Evaluation in a Multisite Model Within a Lupus Clinical Trials Network

• Type of Material: Article
• Authors: Saira Z. Sheikh, University of North Carolina at Chapel Hill; Caroline Donovan, Lupus Therapeutics; Carla Menezes, Lupus Therapeutics; Albert T. Roy, Lupus research Alliance; Andrew Simkus, KDH Research and Communication; Diane Gross, Lupus Research Alliance; Anca Askanase, Columbia University; Rosalind Ramsey-Goldman, Northwestern University; Vikas Majithia, University of Mississippi, Jackson; Nicole Wanty, KDH Research and Communication; Annie McNeill, KDH Research and Communication; Kristen Holtz, KDH Research and Communication; Sam Lim, Emory University
• Language: English
• Date: 2023-10-25
• Publisher: Wiley Periodicals LLC
• Publication Version: Final Published Version
• Copyright Statement: © 2023 The Authors. ACR Open Rheumatology published by Wiley Periodicals LLC on behalf of American College of Rheumatology.
• License: Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International
• Final Published Version (URL): https://doi.org/10.1002/acr2.11612
• Title of Journal or Parent Work: ACR Open Rheumatology
• Volume: 5
• Issue: 12
• Start Page: 701
• End Page: 711
• Grant/Funding Information: GlaxoSmithKline, Pfizer, Genentech, and Bristol‐Meyers Squibb
• Keywords: peer educators; Lupus; Diversity
• Research Categories: Health Sciences, Public Health; Health Sciences, General

Abstract

Objective To assess outcomes related to Lupus Therapeutics’ Patient Advocates for Lupus Studies (LT‐PALS), a peer‐to‐peer lupus clinical trial (LCT) education program designed to improve representation of diverse groups in LCTs. Patients with lupus and clinical trial participation experience were trained as peer educators (PALs) providing trial‐agnostic education to trial‐naive patients with lupus. Methods We used a two‐arm, randomized pretest/posttest study design to evaluate outcomes related to LCT participation: knowledge, attitudes, self‐efficacy, and intentions to participate in an LCT. Five academic medical centers piloted the program. The intervention group (IG) individually received peer‐to‐peer education sessions with trained PALs, primarily via telephone; the control group (CG) received a 3‐week waiting period. We conducted within/between‐group t‐tests and multiple linear regressions with posttest scores as dependent variables and participation in LT‐PALS as the exposure variable. Results The sample (n = 136) included 64 IG and 72 CG participants, with 67.7% identifying as Black. At posttest, IG participants had higher knowledge (P < 0.01) scores than the CG participants. Regression models controlling for participant characteristics showed higher IG posttest scores for knowledge (P < 0.001) and intentions (P < 0.05). From pretest to 3‐month follow‐up, IG self‐efficacy scores increased (P < 0.01). About half (46.9%) of IG participants reported engagement with an LCT at 1‐year follow‐up. Black and Hispanic participants rated higher overall program satisfaction compared with White (P < 0.01) and non‐Hispanic (P < 0.05) participants. Conclusion Findings demonstrated feasibility of LT‐PALS and showed promise in increasing engagement from groups underrepresented in LCTs.