Objective

Little is known about willingness among people living with HIV (PLHIV) to participate in HIV cure research in the Netherlands. We compared results of a cross-sectional questionnaire assessing hypothetical willingness to actual willingness among PLHIV to take part in a clinical HIV cure trial.

Methods

Between March and June 2018, PLHIV visiting the outpatient clinic of a university hospital in the Netherlands were asked to complete a questionnaire about HIV cure research. Results were compared to the number of PLHIV willing to take part in an actual HIV cure study at the same center during an overlapping time period.

Results

In total, 165 participants, predominantly male (80%) from Western European countries (61%) completed the questionnaire. The majority would participate in cure research (n ​= ​111, 67%). Separately, actual willingness among PLHIV to participate in an HIV cure study was addressed in 312 cases. Apart from gender (96% male), baseline characteristics were comparable. Less than half expressed actual willingness to participate in the study (n ​= ​135, 43%).

Conclusions

Hypothetical willingness to participate in cure-related research was high among PLHIV who completed the questionnaire. Actual willingness among eligible PLHIV to take part in an HIV cure study was much lower. Our findings show that questionnaires may overestimate willingness to participate in HIV cure trials and indicate that reasons for refusal in actual research should be further explored.

中文翻译：

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假设问卷可能高估参与 HIV 治愈研究的意愿：横断面调查与荷兰参与 HIV 治愈研究的实际意愿的比较

客观的

在荷兰，艾滋病毒感染者 (PLHIV) 是否愿意参与艾滋病毒治愈研究的情况鲜为人知。我们比较了一份横断面调查问卷的结果，该问卷评估了 PLHIV 参与临床 HIV 治愈试验的假设意愿与实际意愿。

方法

2018 年 3 月至 2018 年 6 月期间，前往荷兰一所大学医院门诊的 PLHIV 被要求填写一份关于 HIV 治愈研究的问卷。将结果与愿意在重叠时间段内在同一中心参加实际 HIV 治愈研究的 PLHIV 人数进行比较。

结果

总共有 165 名参与者，主要是来自西欧国家 (61%) 的男性 (80%) 完成了问卷调查。大多数人将参与治疗研究（n = 111, 67%）。另外，在 312 例病例中解决了 PLHIV 参与 HIV 治愈研究的实际意愿。除性别（96% 男性）外，基线特征具有可比性。不到一半表示愿意参与研究（n = 135, 43%）。

结论

在完成问卷的 PLHIV 中，参与治愈相关研究的假设意愿很高。符合条件的 PLHIV 参与 HIV 治愈研究的实际意愿要低得多。我们的研究结果表明，问卷可能高估了参与 HIV 治愈试验的意愿，并表明在实际研究中拒绝的原因应进一步探讨。