Flaherty Mary Grace, Threats Megan, Kaplan Samantha J
School of Information and Library Science, University of North Carolina, Chapel Hill, NC, USA.
J Patient Exp. 2020 Feb;7(1):132-139. doi: 10.1177/2374373518808310. Epub 2018 Oct 23.
Alpha-gal food allergy is a life-threatening, newly discovered condition with limited presence in authoritative information sources. Sufferers seeking diagnosis are likely to encounter clinicians unfamiliar with the condition.
To understand information practices of individuals diagnosed with alpha-gal allergy, how they obtained diagnosis, and their perceptions of health-care providers' awareness of the condition.
Semistructured interviews with open- and closed-ended questions were completed with a chronological systematic sample of 28 adults (11% of alpha-gal clinic patients at the time) diagnosed with alpha-gal allergy and treated at University of North Carolina Allergy and Immunology Clinic.
The majority of patients determined they had alpha-gal allergy through nontraditional health information channels. Three-quarters of patients rated their primary care provider as having little to no knowledge. In 25 specialists' encounters, 23 were rated as having little to no knowledge.
With new conditions, information is often available through informal networks before appearing in the vetted medical literature. In this study, social connections were the primary pathway to successful diagnosis. Health practitioners need to develop mechanisms to understand that process.
α-半乳糖食物过敏是一种危及生命的新发现病症，在权威信息来源中的相关内容有限。寻求诊断的患者可能会遇到不熟悉该病症的临床医生。
了解被诊断为α-半乳糖过敏的个体的信息获取行为、他们是如何获得诊断的，以及他们对医疗服务提供者对该病症认知程度的看法。
对28名被诊断为α-半乳糖过敏并在北卡罗来纳大学过敏与免疫诊所接受治疗的成年人（当时占α-半乳糖诊所患者的11%）进行了按时间顺序排列的系统抽样访谈，访谈采用了开放式和封闭式问题的半结构化形式。
大多数患者通过非传统健康信息渠道确定自己患有α-半乳糖过敏。四分之三的患者认为他们的初级保健提供者几乎一无所知。在25次与专科医生的接触中，有23次被认为几乎一无所知。
对于新出现的病症，信息往往在经过审核的医学文献出现之前就通过非正式网络传播开来。在本研究中，社交关系是成功诊断的主要途径。医疗从业者需要建立机制来了解这一过程。
