Highlights
- •The barriers and facilitators to trial participation from the patient perspectives are captured in the themes of ambiguity of context and benefit, lacking awareness of opportunity, wary of added burden, skepticism, fear and mistrust, building confidence, and social gains and belonging to the community.
- •Trials were perceived as an opportunity for some patients to access free and high-quality healthcare
- •Patients feared discrimination and inequities in accessing healthcare, particularly among patients from vulnerable ethnic minority groups, discouraged participation in trials.
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.
Keywords
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Article info
Publication history
Published online: January 26, 2021
Accepted:
January 21,
2021
Received in revised form:
January 8,
2021
Received:
September 16,
2020
Footnotes
Conflict of interest: None.
Identification
Copyright
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