Transparency, trust and minimizing burden to increase recruitment and retention in trials: a systematic review

Patrizia Natale, Valeria Saglimbene, Marinella Ruospo, Andrea Matus Gonzalez, Giovanni FM Strippoli, Nicole Scholes-Robertson, Chandana Guha, Jonathan C. Craig, Armando Teixeira-Pinto, Tom Snelling, Allison Tong

Research output: Contribution to journalArticlepeer-review

3 Citations (Scopus)

Abstract

Objective: To describe patient perspectives on recruitment and retention in clinical trials. Study Design and Setting: Systematic review of qualitative studies that reported the perspective of adult patients with any health condition who accepted or declined to participate in clinical trials. Results: Sixty-three articles involving 1681 adult patients were included. Six themes were identified. Four themes reflected barriers: ambiguity of context and benefit – patients were unaware of the research question and felt pressured in making decisions; lacking awareness of opportunities – some believed health professionals obscured trials opportunities, or felt confused because of language barriers; wary of added burden – patients were without capacity because of sickness or competing priorities; and skepticism, fear and mistrust – patients feared loss of privacy, were suspicious of doctor's motivation, afraid of being a guinea pig, and disengaged from not knowing outcomes. Two themes captured facilitators: building confidence – patients hoped for better treatment, were supported from family members and trusted medical staff; and social gains and belonging to the community – altruism, a sense of belonging and peer encouragement motivated participation in trials. Conclusion: Improving the visibility and transparency of trials, supporting informed decision making, minimizing burden, and ensuring confidence and trust may improve patient participation in trials.

Original languageEnglish
Pages (from-to)35-51
Number of pages17
JournalJournal of Clinical Epidemiology
Volume134
DOIs
Publication statusPublished - Jun 2021

Keywords

  • Barriers
  • Clinical trials
  • Patient recruitment
  • Patient retention
  • Research
  • Strategies

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