Baun Christina, Vogsen Marianne, Nielsen Marie Konge, Høilund-Carlsen Poul Flemming, Hildebrandt Malene Grubbe
Department of Nuclear Medicine, Odense University Hospital, Odense, Denmark.
OPEN, Odense Patient data Explorative Network, Odense University Hospital, Odense, Denmark.
J Med Internet Res. 2020 Feb 10;22(2):e15723. doi: 10.2196/15723.
Patient-accessible electronic health records give patients quick and easy access to their health care data, enabling them to view their test results online prior to a clinic visit. Hospital reports can be difficult for patients to understand, however, and can lead to unnecessary anxiety.
We aimed to investigate the attitudes and experiences of Danish patients with metastatic breast cancer in using electronic health records to view their own scan results.
We conducted a prospective mixed-methods study in a sequential design at our institution during 2018. Participants were women with metastatic breast cancer who were having scans every 3 months (combined positron emission tomography and computed tomography or computed tomography alone) to monitor treatment effects. Participants first received an online questionnaire about their knowledge and use of online access to scan results. We then conducted semistructured interviews with 4 women who used the online access to view their scan results.
A total of 46 patients received the questionnaire (median age 66, SD 11.8, range 34-84 years). Of these women, 38 (83%) completed the survey (median age 69, SD 10.7, range 42-84 years). Most patients (34/38) were aware of the opportunity to access their reports online, but only 40% (15/38) used this access to read their scan results. Barriers to online access were (1) anxiety over reading the scan results in the absence of clinician support, and (2) a preference to receive all disease information at their next hospital appointment. The patients who read their scan result found that facilitators were greater transparency and empowerment, and barriers were the consequences of reading bad news, the feeling of dilemma about the access, and the medical terminology.
Patients with metastatic breast cancer generally had a positive attitude toward electronic access to their scan results, and those who used this opportunity played a greater participatory role in their disease and its management. Others described the potential distress this opportunity caused. The study findings suggest that immediate online access to scan results should be available to patients, but it needs a support function alongside that ensures optimal patient care.
患者可访问的电子健康记录使患者能够快速轻松地获取其医疗保健数据，使他们能够在门诊就诊前在线查看自己的检查结果。然而，医院报告可能让患者难以理解，并可能导致不必要的焦虑。
我们旨在调查丹麦转移性乳腺癌患者使用电子健康记录查看自身扫描结果的态度和体验。
2018年期间，我们在本机构采用顺序设计进行了一项前瞻性混合方法研究。参与者为患有转移性乳腺癌的女性，她们每3个月进行一次扫描（正电子发射断层扫描和计算机断层扫描联合或仅计算机断层扫描）以监测治疗效果。参与者首先收到一份关于其对在线获取扫描结果的了解和使用情况的在线问卷。然后，我们对4名使用在线访问查看其扫描结果的女性进行了半结构化访谈。
共有46名患者收到问卷（中位年龄66岁，标准差11.8，范围34 - 84岁）。在这些女性中，38名（83%）完成了调查（中位年龄69岁，标准差10.7，范围42 - 84岁）。大多数患者（34/38）知道有机会在线访问其报告，但只有40%（15/38）使用此访问方式阅读其扫描结果。在线访问存在的障碍包括：（1）在没有临床医生支持的情况下阅读扫描结果时的焦虑，以及（2）倾向于在下次医院预约时获取所有疾病信息。阅读了扫描结果的患者发现，促进因素是更高的透明度和自主权，而障碍是阅读坏消息的后果、对访问的两难感觉以及医学术语。
转移性乳腺癌患者对电子方式获取其扫描结果总体持积极态度，那些利用此机会的患者在其疾病及其管理中发挥了更大的参与作用。其他人则描述了这个机会带来的潜在困扰。研究结果表明，应向患者提供即时在线获取扫描结果的服务，但同时需要一个支持功能，以确保为患者提供最佳护理。
