Center for Health Economics Research Hannover (CHERH), Leibniz University Hannover, Otto-Brenner-Straße 7, 30159, Hannover, Germany.
Faculty of Public Health Services, Ostfalia University of Applied Science, Rothenfelder Straße 10, 38440, Wolfsburg, Germany.
BMC Public Health. 2020 Jun 5;20(1):860. doi: 10.1186/s12889-020-08926-9.
Finding reliable information on one of more than 7000 rare diseases is a major challenge for those affected. Since rare diseases are defined only by the prevalence criterion, a multitude of heterogeneous diseases are included. Common to all, however, are difficulties regarding information access. Even though various quantitative studies have analyzed the use of different information sources for specific rare diseases, little is known about the use of information sources for different rare diseases, how users rate these information sources based on their experiences, and how the use and importance of these information sources change over time.
Fifty-five patients with a variety of rare diseases and 13 close relatives participated in qualitative interviews. For these interviews, a semi-structured guideline was developed, piloted, and revised. Data analysis involved a qualitative content analysis developed by Philipp Mayring.
The participants considered internet as the most important and widespread information source, especially for early information. Although patients have difficulty dealing with information obtained online, they consider online searching a quick and practical option to gather information. During the course of the disease, personal contact partners, especially self-help associations and specialized doctors, become more important. This is also because information provided online is sometimes insufficiently detailed to answer their information needs, which can be complemented by information from doctors and self-help.
People rarely use just one type of source, but rather refer to different sources and informants. The source used depends on the type of information sought as well as other person-related factors such as preexisting knowledge and the disease stage. To improve people's information searching and connect them with medical specialists in rare diseases, a central information portal on rare diseases might be a suitable access point to provide free and quality assured information for patients, caregivers, and physicians. This would allow not only patients but also doctors to find quality assured information on symptoms and therapies as well as patient associations and specialized doctors.
对于受影响的人来说，在 7000 多种罕见病中找到可靠的信息是一项重大挑战。由于罕见病仅根据患病率标准定义，因此包含了多种异质疾病。然而，所有这些疾病都存在信息获取困难的问题。尽管有各种定量研究分析了针对特定罕见病使用不同信息源的情况，但对于不同罕见病使用信息源的情况、用户根据经验如何评价这些信息源，以及这些信息源的使用和重要性如何随时间变化等问题，我们知之甚少。
55 名患有各种罕见病的患者和 13 名近亲参与了定性访谈。为此访谈制定了半结构化指南，进行了试点并进行了修订。数据分析采用了 Philipp Mayring 开发的定性内容分析方法。
参与者认为互联网是最重要和最广泛的信息来源，尤其是在早期信息方面。尽管患者在处理在线获取的信息时存在困难，但他们认为在线搜索是收集信息的快速实用选择。在疾病过程中，个人联系人，尤其是自助协会和专科医生，变得更加重要。这也是因为在线提供的信息有时不够详细，无法满足他们的信息需求，而医生和自助提供的信息可以补充这些信息。
人们很少只使用一种类型的来源，而是会参考不同的来源和信息提供者。所使用的来源取决于所寻求的信息类型以及其他与个人相关的因素，例如现有知识和疾病阶段。为了改善人们的信息搜索并将他们与罕见病的医学专家联系起来，一个罕见病信息中心门户可能是一个合适的接入点，可以为患者、护理人员和医生提供免费且有质量保证的信息。这不仅可以使患者，还可以使医生找到有关症状和治疗方法以及患者协会和专科医生的有质量保证的信息。
