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
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 tr...
| Main Authors: | , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
Wiley
2023-12-01
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| Series: | ACR Open Rheumatology |
| Online Access: | https://doi.org/10.1002/acr2.11612 |
| _version_ | 1797392706368962560 |
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| author | Saira Z. Sheikh Caroline Donovan Carla Menezes Albert T. Roy Andrew Simkus Diane Gross Anca Askanase Rosalind Ramsey‐Goldman Vikas Majithia Nicole Wanty Annie McNeill Kristen Holtz S. Sam Lim |
| author_facet | Saira Z. Sheikh Caroline Donovan Carla Menezes Albert T. Roy Andrew Simkus Diane Gross Anca Askanase Rosalind Ramsey‐Goldman Vikas Majithia Nicole Wanty Annie McNeill Kristen Holtz S. Sam Lim |
| author_sort | Saira Z. Sheikh |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-03-08T23:51:19Z |
| format | Article |
| id | doaj.art-0215de0ad0e44e2fa3bc115f565424fd |
| institution | Directory Open Access Journal |
| issn | 2578-5745 |
| language | English |
| last_indexed | 2024-03-08T23:51:19Z |
| publishDate | 2023-12-01 |
| publisher | Wiley |
| record_format | Article |
| series | ACR Open Rheumatology |
| spelling | doaj.art-0215de0ad0e44e2fa3bc115f565424fd2023-12-13T10:36:14ZengWileyACR Open Rheumatology2578-57452023-12-0151270171110.1002/acr2.11612Feasibility 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 NetworkSaira Z. Sheikh0Caroline Donovan1Carla Menezes2Albert T. Roy3Andrew Simkus4Diane Gross5Anca Askanase6Rosalind Ramsey‐Goldman7Vikas Majithia8Nicole Wanty9Annie McNeill10Kristen Holtz11S. Sam Lim12University of North Carolina at Chapel HillLupus Therapeutics, LLC New York City New YorkLupus Therapeutics, LLC New York City New YorkLupus Research Alliance New York City New YorkKDH Research & Communication Atlanta GeorgiaLupus Research Alliance New York City New YorkColumbia University New York City New YorkNorthwestern University Feinberg School of Medicine Chicago IllinoisUniversity of Mississippi Medical Center JacksonKDH Research & Communication Atlanta GeorgiaKDH Research & Communication Atlanta GeorgiaKDH Research & Communication Atlanta GeorgiaEmory University Atlanta GeorgiaObjective 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.https://doi.org/10.1002/acr2.11612 |
| spellingShingle | Saira Z. Sheikh Caroline Donovan Carla Menezes Albert T. Roy Andrew Simkus Diane Gross Anca Askanase Rosalind Ramsey‐Goldman Vikas Majithia Nicole Wanty Annie McNeill Kristen Holtz S. Sam Lim 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 ACR Open Rheumatology |
| title | 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 |
| title_full | 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 |
| title_fullStr | 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 |
| title_full_unstemmed | 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 |
| title_short | 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 |
| title_sort | 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 |
| url | https://doi.org/10.1002/acr2.11612 |
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