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Public preferences for biopsy risk disclosure in the Netherlands
Thomas C Kwee1, Yfke Ongena2, Derya Yakar1
1Department of Radiology, Medical Imaging Center, University Medical Center Groningen, University of Groningen, Groningen, the Netherlands.
Purpose:
To assess general population perspectives on pre-biopsy disclosure of serious risks and factors associated with a preference for disclosure.
Methods:
2,407 adults from the Dutch general population completed 3,565 case vignettes describing hypothetical patients requiring biopsies, each reporting the risk of serious complications (requiring additional treatment or prolonged hospitalization, or resulting in death). Vignettes varied by patient age (9, 26, 46, or 71 years), probability of serious complications (<0.1%, <1%, <5%, or unspecified), and biopsy purpose (primary diagnosis, staging, or therapy response). Respondents indicated agreement with "If I were in this situation, I would want to be informed" on a four-point Likert scale from strongly disagree to strongly agree.
Results:
Most responses (93.1%) favored disclosure (agreed/strongly agree), while 4.0% opposed (disagree/strongly disagree). For <0.1% risk vignettes, 91.8% of responses favored disclosure. Women were less likely than men to favor disclosure (odds ratio (OR) 0.760, P < 0.001). Agreement was higher for respondents with secondary (OR 1.274, P = 0.028) and tertiary education (OR 1.689, P < 0.001) compared with those with primary education. Agreement was lower for vignettes with a 46-year-old patient versus a 9-year-old (OR 0.778, P = 0.032) and for staging biopsies versus primary diagnosis (OR 0.780, P = 0.006), and higher when risk was < 5% or unspecified versus < 0.1% risk vignettes (OR 1.304, P = 0.023; OR 1.618, P < 0.001).
Conclusion:
Most Dutch people want disclosure of serious biopsy risks, including very low-risk events, though a small minority preferred not to be informed, with preferences influenced by respondent characteristics and clinical context.
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