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Open AccessJournal ArticleDOI

Adherence and retention in clinical trials: a community-based approach.

TLDR
The Community Health Advisor (CHA) model has been widely used to recruit rural and low‐income, mostly African American women into clinical and behavioral research studies, but little is known about its effectiveness in promoting retention and adherence of such women in clinical trials.
Abstract
BACKGROUND The Community Health Advisor (CHA) model has been widely used to recruit rural and low-income, mostly African American women into clinical and behavioral research studies. However, little is known about its effectiveness in promoting retention and adherence of such women in clinical trials. METHODS The Community-Based Retention Intervention Study evaluated the effectiveness of a community-based intervention strategy using the CHA model and the empowerment theory to improve the retention and adherence of minority and low-income women in clinical trials. The research strategy included the training and use of the volunteer CHAs as research partners. The target population included women participating in the University of Alabama at Birmingham clinical site of the Atypical Squamous Cells of Undetermined Significance–Low-Grade Squamous Intraepithelial Lesion (ASCUS-LSIL) Triage Study (ALTS), a multicenter, randomized clinical trial. Two communities in Jefferson County, Alabama, that were matched according to population demographics were identified and randomly assigned to either an intervention group or a control group. Thirty community volunteers were recruited to be CHAs and to implement the intervention with the ALTS trial participants. In total, 632 ALTS participants agreed to participate in the project, including 359 in the intervention group, which received CHA care, and 273 in the control group, which received standard care. RESULTS Adherence rates for scheduled clinic visits were significantly higher in the intervention group (80%) compared with the control group (65%; P < .0001). CONCLUSIONS The results indicate that volunteer CHAs can be trained to serve as research partners and can be effective in improving the retention and adherence of minority and low-income women in clinical trials. Cancer 2014;120(7 suppl):1106–12. © 2014 American Cancer Society.

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Impact of patient and public involvement on enrolment and retention in clinical trials: systematic review and meta-analysis

TL;DR: Findings add weight to the case for PPI in clinical trials by indicating that it is likely to improve enrolment of participants, especially if it includes people with lived experience of the health condition under study.
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Strategies to improve retention in randomised trials.

TL;DR: The effect of strategies to improve retention on the proportion of participants retained in randomised trials and to investigate if the effect varied by trial strategy and trial setting were quantified.
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Needs, Priorities, and Recommendations for Engaging Underrepresented Populations in Clinical Research: A Community Perspective

TL;DR: Improvement of research participation among underrepresented groups is facilitated, ultimately reducing health disparities and improving quality of life among groups commonly omitted from research recruitment and participation.
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Cancer Disparities and Health Equity: A Policy Statement From the American Society of Clinical Oncology

TL;DR: This updated statement affirms ASCO's commitment to moving beyond descriptions of differences in cancer outcomes toward achievement of cancer health equity, with a focus on improving equitable access to care, improving clinical research, addressing structural barriers, and increasing awareness that results in measurable and timely action toward achieving cancer health Equity for all.
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Recruitment and retention strategies in clinical studies with low-income and minority populations: Progress from 2004-2014.

TL;DR: This review identified 165 studies published in English between 2004 and 2014 that demonstrated effective recruitment and retention strategies for low-income and minority groups, differential effectiveness across groups, and implications for future research are discussed.
References
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Journal ArticleDOI

Empowerment Education: Freire's Ideas Adapted to Health Education:

TL;DR: A literature review demonstrating that powerlessness is linked to disease, and conversely, empowerment linked to health; an exposition of Brazilian educator Paulo Freire's empowering education theory with a comparison to traditional health education; and a case study of an empowering education substance abuse prevention project.
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Community health workers: integral members of the health care work force.

TL;DR: Information sharing, program support, program evaluation, and continuing education are needed to expand the use of community health workers and better integrate them into the health care delivery system.
Journal ArticleDOI

Outcome effectiveness of community health workers: an integrative literature review.

TL;DR: Although CHWs show some promise as an intervention, the role can be doomed by overly high expectations, lack of a clear focus, and lack of documentation, so further research is required with an emphasis on stronger study design, documentation of CHW activities, and carefully defined target populations.
Journal ArticleDOI

ASCUS-LSIL Triage Study. Design, methods and characteristics of trial participants.

M Schiffman, +1 more
- 01 Sep 2000 - 
TL;DR: The successful enrollment, randomization and high rates of follow-up are encouraging, and the study will help clarify the optimal strategies for managing low grade cervical abnormalities.
Journal ArticleDOI

Recruitment and Retention of Minority Women in Cancer Screening, Prevention, and Treatment Trials

TL;DR: Estimated barriers to recruitment were lack of awareness, lack of transportation, interference with work/family responsibilities, financial costs, negative side effects, and burdensome procedures.
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