Erasmus School of Health Policy & Management, Erasmus University, Rotterdam, The Netherlands.
Department of Neurology, Elisabeth-TweeSteden Hospital, Tilburg, The Netherlands.
PLoS One. 2023 Feb 3;18(2):e0280768. doi: 10.1371/journal.pone.0280768. eCollection 2023.
The disclosure of online test results (i.e., laboratory, radiology and pathology results) on patient portals can vary from immediate disclosure (in real-time) via a delay of up to 28 days to non-disclosure. Although a few studies explored patient opinions regarding test results release, we have no insight into actual patients' preferences. To address this, we allowed patients to register their choices on a hospital patient portal. Our research question was: When do patients want their test results to be disclosed on the patient portal and what are the reasons for these choices? We used a mixed methods sequential explanatory design that included 1) patient choices on preferred time delay to test result disclosure on the patient portal for different medical specialties (N = 4592) and 2) semi-structured interviews with patients who changed their mind on their initial choice (N = 7). For laboratory (blood and urine) results, 3530 (76.9%) patients chose a delay of 1 day and 912 (19.9%) patients chose a delay of 7 days. For radiology and pathology results 4352 (94.8%) patients chose a delay of 7 days. 43 patients changed their mind about when they wanted to receive their results. By interviewing seven patients (16%) from this group we learned that some participants did not remember why they made changes. Four participants wanted a shorter delay to achieve transparency in health-related information and communication; to have time to process bad results; for reassurance; to prepare for a medical consultation; monitoring and acting on deviating results to prevent worsening of their disease; and to share results with their general practitioner. Three participants extended their chosen delay to avoid the disappointment about the content and anxiety of receiving incomprehensible information. Our study indicates that most patients prefer transparency in health-related information and want their test results to be disclosed as soon as possible.
在线测试结果(即实验室、放射科和病理科结果)在患者门户上的披露方式可以从即时披露(实时)到最长 28 天的延迟,再到不披露。尽管有一些研究探讨了患者对测试结果发布的看法,但我们并不了解实际患者的偏好。为了解决这个问题,我们允许患者在医院患者门户上注册他们的选择。我们的研究问题是:患者希望何时在患者门户上披露他们的测试结果,以及这些选择的原因是什么?我们使用了一种混合方法顺序解释设计,包括 1)患者对不同医疗专业的患者门户上测试结果披露的首选延迟时间的选择(N=4592)和 2)对改变初始选择的患者的半结构化访谈(N=7)。对于实验室(血液和尿液)结果,3530(76.9%)名患者选择延迟 1 天,912(19.9%)名患者选择延迟 7 天。对于放射科和病理科结果,4352(94.8%)名患者选择延迟 7 天。43 名患者改变了他们想要接收结果的时间。通过对这一组中的 7 名患者(16%)进行访谈,我们了解到一些参与者不记得他们为什么做出改变。四名参与者希望缩短延迟时间,以实现健康相关信息和沟通的透明化;有时间处理不好的结果;获得安慰;为医疗咨询做准备;监测和处理异常结果,以防止病情恶化;并与他们的全科医生分享结果。三名参与者延长了他们选择的延迟时间,以避免对内容的失望和接收难以理解的信息的焦虑。我们的研究表明,大多数患者希望在健康相关信息方面具有透明度,并希望尽快披露他们的测试结果。