ImportanceDiabetic retinopathy (DR) is the leading cause of blindness among adults in the US. The US Centers for Disease Control and Prevention recommends annual DR monitoring for all individuals with diabetes, yet monitoring rates remain below 70%.ObjectiveTo evaluate how patient preferences and expectations about DR monitoring are associated with expected monitoring adherence behaviors.Design, Setting, and ParticipantsIn this survey study, a web-enabled survey instrument was developed and implemented with a discrete-choice experiment to characterize patient preferences for outcomes of DR monitoring and graded-pair questions to quantify patients’ expectations about the impact of DR monitoring on blindness risk. The survey was conducted through ResearchMatch, a US National Institutes of Health–developed online platform, among adults with self-reported, physician-diagnosed diabetes. Recruitment occurred between September 15, 2023, and October, 17, 2023, and data analysis occurred between October 2023 and December 2023. Results from the 2 tasks were combined to derive patients’ expected monitoring behavior following a recently proposed treatment adherence framework. The survey instrument was pretested in cognitive interviews and validated for the purposes of this study.ExposureSurvey-based discrete-choice experiment and graded-pair questionsMain Outcomes and MeasuresParticipants’ relative preferences for DR-related blindness risk reductions, monitoring time, and out-of-pocket monitoring costs were quantified, as well as the degree to which participants expected adherence to monitoring to affect the risk of blindness. By combining how much participants valued specific reductions in blindness risk (relative to monitoring costs) and their expected risk reduction through monitoring, the rate at which patients would maximize the benefit of monitoring appointments was assessed.ResultsThe survey was completed satisfactorily by 304 respondents of 542 individuals invited to participate. Mean (SD) respondent age was 40.5 (11.2) years, and 169 respondents (56.1%) were female. Reductions in blindness risk were valuable to participants. Participants required a 3.87 (95% CI, 1.91-5.88) percentage-point reduction in 5-year blindness risk to be fully adherent to an annual 53-minute monitoring visit with a $26 co-payment, but respondents expected DR monitoring to reduce the 5-year blindness risk by 0.71 (95% CI, 0.21-1.28) percentage points.Conclusions and RelevanceIn this online survey study among adults with diabetes, measurement of patient preferences and expectations about DR monitoring with properly validated instruments offered an opportunity to assess patient health behaviors. The association between preferences and monitoring expectations was generally consistent with monitoring nonadherence among adults with diabetes and offers insights that may help address inconsistent DR monitoring.

中文翻译：

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量化患者对糖尿病视网膜病变监测的偏好和期望


重要性糖尿病视网膜病变 （DR） 是美国成年人失明的主要原因。美国疾病控制和预防中心建议对所有糖尿病患者进行年度 DR 监测，但监测率仍低于 70%。目的评估患者对 DR 监测的偏好和期望与预期监测依从性行为的关系。设计、设置和参与者在这项调查研究中，开发并实施了一种支持网络的调查工具，并通过离散选择实验来描述患者对 DR 监测结果的偏好，并采用分级对问题来量化患者对 DR 监测对失明风险影响的期望。该调查是通过美国国立卫生研究院开发的在线平台 ResearchMatch 进行的，对象是自我报告、经医生诊断的糖尿病成人。招募发生在 2023 年 9 月 15 日至 2023 年 10 月 17 日期间，数据分析发生在 2023 年 10 月至 2023 年 12 月期间。将 2 项任务的结果结合起来，根据最近提出的治疗依从性框架得出患者的预期监测行为。该调查工具在认知访谈中进行了预先测试，并针对本研究的目的进行了验证。暴露基于调查的离散选择实验和分级对问题主要结局和措施量化了参与者对 DR 相关失明风险降低、监测时间和自付费用监测成本的相对偏好，以及参与者预期监测依从性影响失明风险的程度。 通过结合参与者对失明风险特定降低（相对于监测成本）的重视程度和他们通过监测预期降低的风险，评估了患者将监测预约的好处最大化的比率。结果受邀参与的 542 人的 304 名受访者圆满完成了调查。平均 （SD） 受访者年龄为 40.5 （11.2） 岁，169 名受访者 （56.1%） 为女性。降低失明风险对参与者很有价值。参与者需要将 5 年失明风险降低 3.87 （95% CI，1.91-5.88） 个百分点，才能完全遵守每年 53 分钟的监测访问和 26 美元的共付额，但受访者预计 DR 监测可将 5 年失明风险降低 0.71 （95% CI，0.21-1.28） 个百分点。结论和相关性在这项针对成年糖尿病患者的在线调查研究中，使用经过适当验证的工具测量患者对 DR 监测的偏好和期望为评估患者健康行为提供了机会。偏好和监测期望之间的关联通常与监测成人糖尿病患者的不依从性一致，并提供了可能有助于解决不一致的 DR 监测的见解。